I have been on IVIG infusions for 8 years.  The side effects have been severe at times including swollen red eyes, nausea, headache, itching, etc.  My kidneys failed after an infusion a few years ago.  It was determined that the rate of my infusion had to be reduced to 20 ml per hour.  If my infusion is turned up for even 30 minutes, my creatinine levels are above normal levels the next day.  
It has been difficult to explain this to nursing staff administering my infusion, as they have never heard of this happening before, and they want to run it as fast as I can tolerate.
My physician has written specific orders regarding my rate to make sure it is never turned up past 20.  My infusion takes 26 hours, however my infection rate is decreased, I am healthier the rest of the time, and I still have functioning kidneys.

IVIg caused Hemolytic Anemia after infusion.  I was given 3 blood transfusions of another blood type to stop antibodies from attacking my red blood cells.  To my understanding this is a very rare side effect of IVIg but I feel it needs more attention by physicians.

I'm convenced that the infusion rate makes all the difference as far as the headaches and plead with the nurse to slow it down but she claims that as long as the blood pressure doesn't go up too much it is alright. I think that she just wants to go home.

After 6 years on Gamunex IVIG I started experiencing blinding auras- white lights in front of my eyes. I always had ro pre med. Benydryl zofran and tyelnol.

Then a steroid was added but the side effects were bothersome.

My Immunologist switched me to SCIG- first Vivaglobin (which I wish were still available as I did not have to pre medicate) and then Hizentra( benydryl tylenol before and after- sometimes two days on the tylenol.

For insurance reasons I was switched to Gammargard and had 7 side effects( even with pre meds )  and was put back on Hizentra.

This caused me to have to readjust and finally after a month= the migraines slowed down after the infusion.

After my experiences,I think it is the cleansers they use in the preoarationof the product that causes these side effects. Vivaglobin has the fewest of these cleansers.

Re Angela's comment.
I think you are probably right. Just because your blood pressure is ok does not give your nurse any indication that you are not suffering from side effects!
Especially post infusion headaches. If it were me I would speak with my doctor about what is happening to you. Your doctor should be able to speak to rate related side effects.

I have been lucky so far, with no signficant adverse side effects.  I am given Tyelenol and Benadryl before the infusion.  I also drink lots of water before and during the infusion and bring food to eat.

I have been getting weekly IVIG infusions for about 20 years. I still have headaches, muscle pain and nausea--wtihout premeds.

I used to go to the hospitals outpatient IV department for my infusions. Once they gave me the IV benadryl which put me to sleep for a while; the nurse turned the infusion rate from 50 to 250.  I would then wake up and throw up and have a massive heeadache. the nurse would then call my doctor and laugh. I reported her to the state nursing board.  IF anyone feels that the nruse is turing it up too high you shoudl tell her to slow it down and report her to the supervisor and to your doctor.  

I just discovered this site and read the comments. Scared me a bit. I have been receiving IGIV for four years now for my CVID and have not had any side effects. I just turned 65 and I feel very fortunate now that I see how severe some of these side effects can be. I suppose that the side effects can "kick in" at any time and just because I have not had any so far is not guarantee that I won't have any in the future. I went to a PID conference two weeks ago (my first) and learned lots, in addition to meeting many very nice folks. It is still hard for me to believe that I ended up with this "stuff." But I guess it is what it is. I will continue to count my blessings.

I've been having IV/IG for 1 year as of this month and have had severe migraines, chills & fever pretty much every other time.  This is despite switching brands 3x (currently on 5%) and taking 20 mg Prednisone, 2 Tylenol Extra Strength & Allegra D morning of IV/IG.  The rate of infusion has been 150 and takes about 7 hours or so for 40 grams.  I am really open to any other suggestions, though am apprehensive about SCIG since I really don't want to do this twice a day.

Sorry, I meant SCIG once a week at home, not twice a day.  Got distracted.

Sue, I'm in the same boat you are.  This May makes 19 years that I have been receiving IVIG.  Early on in my diagnosis, I was doing home infusions.  One time I feel asleep at one rate and when I would wake up feeling horrible at another rate.  The nurse turned up the rate because she had a date that she was going to be late for that evening, it was a friday!  Although I felt betrayd and unsafe, I didn't say anything because I was new at it. Now, it's a different story.  I'm currently going to my doctors infusion suite for treatment and have to go at a a rate of 30 to 35 because of my kidneys.  IF I EVER HAVE TO HAVE THEM AT HOME, BE DARN SURE THAT I'LL HAVE A FRIEND WITH ME IN CASE I FALL ASLEEP.  I wish I had your forethought and initiative way back when like you did to turn her in.  

I have been receiving IVIG for nearly 9 yrs.  At first, I used Gammunex with fairly mild side effects.  Then my supplier insisted it was no longer available and put me on Gammagard that caused bad headaches, fatigue, pain and some nausea.  I finally wrote to IG Living regarding how I could get back to Gammunex.  They quickly responded that all I needed to do was have my doctor write an RX for "Gammunex Only" and that did it!!  I do much better now.  My premeds are 400 mg Ibuprofen, 25 Benadryl, 50 mg IV solu-cortef pre and post treatment.  I also take my RX headache meds and pain meds as I also suffer from FM and chronic fatigue.  I am doing much better now and no longer have to wipe out my schedule for a week after tx!  Thank God for the resource of IG Living! I do have problems sleeping the first and often second night after tx that I am sure is due to the steroid.  I just block out a few days to adjust and rest when I can.  But, so much better than I did with Gammagard!!

PS After using Gammagard for years, I was no longer having "good days" and was down nearly the entire month.  Therefore, you can see why I am so happy about the change.

As an infusion nurse who regularly infuses patients with IVIG, I ALWAYS look to the patient and her/his side effects to determine rate. Blood pressure is not the only indicator. I discuss and assess (an important nursing function) the patient's previous side effects and discuss the rate with the patient. It is important to only infuse the patient at a rate tolerated by that specific patient; not the last 5 patients who could tolerate at max rate. The patient should INSIST that the rate be lowered if side effects have been a problem. If I were the patient and someone turned up the rate while I was asleep in order to leave earlier, I would call the company and refuse that nurse in the future as well as report to the doctor. Be pro-active and know your rights and if your are not assertive to stand up for yourself, bring a family member or friend to ensure you are being treated fairly  and that your infusion is being run at a rate you agreed to.

Thank God for nurses like you, Leslie.  I have been so blessed to have home infusions nearly the entire 8+ years of treatments with the same nurse who has become a friend!  As of December, my husband retires, thus Medicare becomes primary.  As a result, I will have to drive an hour each way to have my treatments in my physician's office.  I am concerned that I may end up in outpatient hospital due to the length of my infusions...at least 8 hours.  I used to work at the doctor's office, so know some of the nurses.  I do hope I won't have problems with them, but my doctor is good at listening to my concerns.  I feel so blessed.  I only wish I could continue home care, though.  If only Congress would approve the bill before them that would include coverage for home infusions for those of us that are blessed enough not to be considered 'home bound' to meet Medicare's criteria!

Marilyn,
I would recommend slowing down the rate of the infusion. I get 45 grams every week of Gammaguard. We infuse it at 50 for 30 minutes and then leave the rate at 100 for tthe remaining 6 hours. Slowing down the rate really helped me have less side effects. I hope this will help you.

I agree with this.  My doctor told me when I first started IVIG that flow rate was the biggest cause of side effects.  I have 30 gms over nearly 8 hours (includes pre meds of a liter of fluids, solu-cortef, benadryl and ibuprofen).  I still get a headache, but not as severe as with the faster flow rate.  In addition, my BP isn't impacted as much.  It is a learning process...God bless.

Why is it that no one mentions hair loss with IVIG.  About a year or more ago, Gammagard was discontinued temporarily and Octagam substituted in its place. I noticed thinning hair.  The physician changed the prescription to Flebogamma and, after a few months, the same thing.  After much reading, I discovered that it falls out for as long as the prescription is in the body, then stops, and when another infusion is due, the hair loss starts all over again.  It is one long cycle of hair loss.  This side effect is purely anecdotal and, hence, not documented.  

I called several companies and they claimed it was less than 1%, while others never heard of it but skimmed over the issue by saying it would be included in "other side effects" in their literature.  

And, I speak up about side effects and have had nurses who claimed I did not need any hydration and that there is no need to start out slower, etc.  Once I had a nurse turn it down to a crawl because break-time was due, and I was close to going home.  Do the medical staff think we do not notice the ineptitude associated with ego-driven personalities.

My last infusion in March was the most frightening.  My hands, calves, and feet were swollen for two days, and my blood pressure was abnormally low.  Eventually, it dissipated but I still had to wait two weeks to see my doctor to discuss the side effects.  And, now I am off IVIG for a period of six months with blood work scheduled twice during that time to monitor levels.  

I sometimes wonder why I am on it.  All my life I have been asymptomatic and because I had an infection, I was put on infusions to bring up the levels.  All that time, money, and side effects--how could something claimed to be so beneficial be so physically disabling.  Let's not talk about fatigue, headaches, rashes, hives, cramps, flushes, joint pain and on and on and on.  But the hair loss was the most depressing.  My heart goes out to cancer victims.  

At this time, I am free--free from all side effects--free from a wasted day at the "office" and free from the thought that I might suffer from congestive heart failure because of this wonder drug.  

I won't let it claim my body.  

Hair loss is a side effect I have never heard of. It sounds like you may want to consider getting a second opinion. If you really do have an immune deficency you will need some type of treatment. I have had CVID since birth. By the time it was offically diagnosed I was 30 and , years of infections have done significant damage to my lungs. Please don't write off a treatment that you might need.

I am so sorry, Saundra, to hear you have had such a difficult time with side effects.  Of course, you always have to weigh the good and bad from any treatments.  If you are doing well without them, good for you!  From my own experience, the benefits far outweigh the side effects.  I was diagnosed with CVID when I came down with tuberculosis.  Thank God I worked for physicians because it was the annual TB testing that caught it!  I had all sorts of complications from the TB drugs, but after 9 months, finally completed tx.  They started testing me for PID after and found the CVID, thus starting me on IVIG.  I have done quite well, in spite of some side effects, doing better on Gammunex than any other.  I have had pneumonias, sinus infections, Hepatitis A, and some other issues, but have recovered, thank God.  Before treatment, I was sick a lot, but after nine years, I am mostly doing well.

We all are impacted as individuals, so what is good for one is not necessarily good for another.  This blog is a wonderful forum for exchanging ideas and experiences.  I feel blessed to have IG Living as a guide and this blog for ideas to help me live and cope with CVID.  I thank God for the treatments available to those of us that are helped by it.  Otherwise, I wouldn't be able to go out in public and enjoy and pretty normal life.

God bless you.  You are in my prayers, Saundra.

Just a quick note of appreciation to Sue M and Linda T for your encouraging responses.  My aim was to call attention to this devastating side effect that is never addressed by the companies who market the globulin.  I included a rather interesting link to wellness.com that addresses a wide array of the side effects we experience.  To confirm my concern that hair loss is on the back burner, notice where it is mentioned in the article--under OTHER and the very LAST TWO WORDS, no less.  We need to let our IVIG family know this.  Google your medication plus the words hair loss to see what comes up.

And, to clarify, I am three months free of the medication and have never felt better since the treatment stopped.  And, so has the hair loss, by the way.  I lived 70 healthy years without globulin, and the last five years have been the worst I ever lived--now, at least, the mitochondria are doing what they do best--providing energy.  If the visible side effects are burdensome, what is happening to the rest of the cells in our body that we do not see on a daily basis?  

www.wellness.com/.../intravenous-immunoglobulin-therapy

I am so happy you are doing well.  Maybe you don't need IVIG?  Certainly, you don't need such awful side effects.  God bless you and may you continue to do well.

I've had 6 infusions so far and have noticed some changes but not a lot.Does anyone know when I will start feeling like myself again?I still feel so tired and week at times.

I have been receiving IVIG for many years. I always feel tired for about 2-3 days after my infusion. I would recommend making sure you eat a balanced diet and exercising on a regular basis. I can only walk or ride my exercise bike (due to lung issues) but, I do one or the other every day. I do feel better and have more energy if I exercise.

Do you have reactions to the IVIG? If so, you may want to try some pre-meds to lessen the reaction.  

I have been having them for nearly eight years and I honestly don't remember how long.  I started with Gammunex and didn't have too many problems.  However, my supplier changed me to Gammagard and I continued to have worsening side effects until I rarely had a good day!  I finally (through the help of IG Living!)found out how to get back on Gammunex and am doing much better, thank God.  Check with your physician with your side effects and hopefully, he/she will work with you until you find the best treatment for you.  Oh, also, as you probably know, the flow rate of the infusion has a big impact.  Mine was slowed down to nearly eight hours which lessened the headaches.  God bless and good luck!

I, too, feel fatigued and have headaches for a a few days with each treatment.  I do have l liter of fluid, 50 mg solu-cortef pre and post treatment, 25 mg benadryl and 400 mg ibuprofen.  I also use my headache or pain meds to help.  One of the main things I do, when possible, is plan no commitments for a few days after treatment.  This is mainly due to lack of sleep from the solu-cortef the first night or two.  All in all, I feel I am doing pretty well.  I also feel better if I can walk,and one of the best things for exercise is doing them in a heated pool.  This was prescribed for my fibromyalgia pain, but it is wonderful  for all over.  I do not have a pool, but my physical therapy facility has one I can use for $58 a month as often as I want to.  I would like to get a small pool at home because it is 20 miles away, taking time, gas and commitment!  Hopefully, some of these ideas will help.  

I have had infusions since November last year, the first few months were not so bad but then the provider for the medicine was changed and since then I have still been sick most of the time, am very tired and have noticed hair loss in the last 2 months. I am wondering what can be done for the joint pain and hair loss, and how many others have had the same problems.

Does hair loss from ivig infusions ever stop? Does anyone know if there is a hair product that can be used to stop hair loss caused by ivig infusions?

I have been on IVIG for over three years now. I started dosing at 80 and had MASSIVE headaches 2 - 3 days after therapy. I have since reduced to about 50 - 55 and am doing much better. I still get headaches but they are tolerable. I have found a combination of meds to help significantly: Benadryl immediately before infusion and every 4 - 6 hours after for 2 - 3 days. I also alternate aspirin and Advil every 4 - 6 hours as well. The aspirin helps to thin the blood, a side effect of infusion. Hydration is also very important. Drink at least 64 ozs. of fluids the day before, the day of, and up to three days after infusion. I have also found Meloxicam (anti-inflammatory NSAID) to be very helpful when symptoms of headaches and muscle aches flair up. When the headaches come, and they sometimes still do, the only thing that helps is Vicodin.
I have also experienced hair loss but chalked it up to peri-menopause. Now I am not so sure. I will have to talk to my doctor about this side effect.
As for rate of improvement in general health, it was a good 4 - 6 months after I first started therapy before I got my energy back and felt like a real person again. I am grateful to have this treatment as it has significantly reduced my rate of infections.
I would like to know if any other CVID or CLL patients have had bowel problems as one of their continuing health issues. I have been treated for both H-Pylori and SBBO (small bowel bacterial overgrowth) over two years time and seem to have lingering issues. Anyone else?

I had my first monthly IV infusion on December 5th, 2012. At about 2 the following morning, I woke up with a severe headache, a fever and a stiff neck. Yep--I'm one of a handful of people who got aseptic meningitis from the infusion. Fun times at the hospital for several days. My doctor then decided--I have CVID--that I should try the sub-cutaneous infusions, and I started those around the 6th of January and have been having then every week since.

I have, sometimes, pretty nasty side effects. Full flu-like symptoms, extreme weakness, low grade fever and headache. I am usually down for 3 days or so after an infusion. THis coming week I am going on vacation for 5 days. I am a full-time caretaker, so 5 days away is a big deal. I have SO much to do to make sure my husband is OK while I'm gone. Tomorrow is infusion day, and I DO NOT want to do it. But I know I have to. I can't risk not having it. But I am afraid I won't get everything done. I know this sounds stupid, but I keep thinking--what if the meningitis comes back? What if what if what if.

So tonight I have taken ibuprofen and benedryl. I thought I had some steroids left, but can't find them, so I'm hoping the benadryl (sp?) will help. DO any of you know of anything else that might help? Thanks for being here!

My son Matt was 19 years old and was having ivig for kidney rejection he has been on this treatment for 8 weeks every time he had ivig infusion he was sick the flow rate was never to go over 30 on his last dose which was a wednesday they gave in phenergan to put him to sleep so they could increase the flow which was increased to 120 two days later for son has passes away in his sleep.....please don't let the nurses increase the flow rate we believe he had adverse reaction anaphylaxis shock. We were never informed about in side effects of this treatment We are now waiting for the autopsy report to confirm.

My prayers to all of you who are experiencing problems.  About a year and a half ago I had a cough induced sub-arachnoid hemorrhage after having a cough for several months.  I got a life flight out of the deal (not cheap) and very nearly died.  I have had recurring sinusitis, pneumonia, bronchitis, ear infections for years and was finally diagnosed with low IG.  A compromised immune system is a bad thing for a school teacher.
Anyway, for me the IVIG infusions are wonderful.  They help me stay so much more healthy than before I started them.  I still get a reoccurring cough from time to time  but nothing like before.  
I too get headaches after my infusions.  The wonderful nurses at our local hospital infusion center know me and how fast they can go with me.  It makes little difference.  I still can plan on not feeling great for a couple of days and having a headache. (Even with pre meds)
Everyone is different and all experience different side effects but again, mine are mild compared to the good effects!
God bless you all, and I hope something can be done to help you.  
I truly understand.
It is nice to know that there are so many out there that I can empathize with!

Hello everyone, a newbie to IVIG, I am scheduled to start receiving treatments in the next few weeks. I am scared. Does anyone here use IVIG to treat dermatomyositis?

Hi! I have CVID, and am currently (sort of) on SCIG. Last December I had my first infusion, the IVIG, for the entire month. 15 hours later I was in the ER with aseptic meningitis. It was not fun.

So my doc changed me to SCIG, and I learned to do my infusions at home. I learned that if I premedicated with Tylenol, and with a Histamine 1 blocker (Zyrtec or benedryl) and a Histamine 2 blocker (Famotadine, or Pepcid, works best), and if I continued these meds for a couple of days after the infusions, I was fine.

Until 4 weeks ago. A few days after an infusion I had a horrific headache, and my neck hurt like hell and got stiff. I ran a fever of 102. But even after having meningitis--it did not click. I got better in a few days. The next week, after the infusion, it happened again. And the week after that--last week. I managed to get an appointment with my PCP last Wednesday. I had a headache, fever, and my neck was stiff--here was the weird part--I could bend it to my chest but could not turn it left or right. (Apparently stiff in general is not good). He decided to do an LP (spinal tap) but the only way to get one quickly was to admit me into the hospital, have one done, and then discharge me the next day. We all expected the CFS (spinal) fluid to be clean. Instead they found white cells, and that means meningitis. So no, I didn't get to go home for several days.

The problem with aseptic meningitis is it looks just like other nastier forms of the disease. So you get pumped full of antibiotics and antivirals and things you cannot pronounce or spell. if, after culturing your CFS, you do not have any growth in those cultures after 72 hours--which means it IS aseptic--you (meaning me) get to go home.

Here's my dilemma. My immunology doc has not contacted me, either when I was in hospital or since I've been home. I haven't had an infusion for 10 days. No way in HELL am I doing another without major premedication. I don't know the answer to this--there might not be one. I do know this--the infusions helped me so much! I have not been sick until this last bit. So I KNOW they are worth it.

However, as you can imagine, I'm a bit nervous. Aseptic meningitis doesn't kill you. Other things I could catch could. I know this. I just wish my doc would call.

Thank you for giving me a place to talk about this.

I just received 3 days of IVIG for chronic severe thrombocytopenia. They gave it to me in 3 hours, and on the machine it said"100g", so I figure that was the rate of infusion. The first day I did okay, except I felt like I had asthma and was very knocked out by the benadryl. As the benadryl wore off, my breathing got better, so the second day they did not give me any benadryl, only tylenol.  My breathing was fine without the benadryl. BUT, my vein in my upper arm started to hurt for the last 30 minutes of the infusion, and it seemed to be bruising my vein. The nurses just looked at it and said something like "Gee, I don't really see much of anything." They did not change the rate of infusion. Later that day, I started to get a fine headache, which actually grew worse as time went on. By the third day, I went in and told them of my headache, but no mention was made that perhaps we needed some other antihistamine. To her credit, the nurse did ask me if I was to have it at the rate of 50 or 100, and I said 100 since I that was what was done before, and I had not yet been enlightened by this website as to the benefits of taking it in more slowly. My head hurts but advil did not do much for it, my eyes feel sore and sensitive to light. I feel a repulsion towards protein, which is not normal for me.
The other little thing I discovered was that if I took the stray IV cord and warmed it up against my chest and in my hands, my arm did not hurt and I could fall asleep. Why would nurses not know to suggest that?
It seems there is such a top-down hierarchy in the medical profession,  that many nurses just do not have the information they need to be helpful or proactive with each new patient. They just are expected to take orders and do all the work, without being empowered with the knowledge needed. That must be how millions of serious mistakes are made. How could they let me go without some kind of antihistamine?
I am calling the doctor now, because it is possible I have aseptic meningitis. But no-one informed me of what to look for at the hospital with serious side-effects. They seem to just hope for the best.
Thank you all for sharing your valuable experiences and wisdom.

I have just been formally with having Stiff Persons Syndrome, although I have been living with it for nigh on 25years. It has been treated with drugs clonazepam and sodium valproate and I have been reasonably stable on this regime. My Consultant now is asking for me to go onto an IVIg regime and to stop the drugs.

The middle of last year I had an 8 hour operation for cancer which required me to go into intensive care for observation purposes, but ended up on a life support machine for a few hours as I was having difficulty in breathing. This is probably a red herring, in this thread, but I've mentioned it - just in case.

Reading your comments/experiences fills me with dread at the thought of IVIg and as I suspect I am being used as a guinea pig especially as my Consultant says I don't have to go for it I feel like telling him NO. He hasn't mentioned any side effects other than it is a 50/50 chance it might do me some good!

Your comments are all very negative, which is what I would expect on a site referring to side effects, but is there anyone among you who can offer me any uplifting experience to even out the playing field and help me to come to an informed decision.

Thank you, in advance, for your comments  

Yes, most people post here because they are having side effects of IVIG. I still have side effects that last for a few days after infusion - headache, stiffness, joint pain, etc. It's like getting sick with the flu. Many side effects can be reduced with the same treatments you would take for flu symptoms (Tylenol, fluids, Benadryl, etc.). In the end I can say that IVIG has changed my life. I have Chronic Lymphocytic Leukemia which has significantly depleted my B-cells and how they function causing a severely depressed immune system. I used to be completely exhausted every day and I suffered from multiple infections all the time. I was on constant antibiotics. It got to the point where I couldn't get rid of a urinary tract infection without being on a 20 day course of Cipproflaxen, a very strong antibiotic. The overuse of antibiotics completely messed up my bowels and I lost 15% of my total body weight. Since I started IVIG three ears ago I have only had to take antibiotics a few times and I am healthier than I have been in a long time. While the side effects can be bothersome, and sometimes overwhelming, the benefits of IVIG far outweigh the negative points.

I get 90 grams infused over 2 days (about 3-4 hours a day) for a dx of Lewis-Sumner Syndrom which is a form of CIDP (my anti-bodies attack the Myelin Sheath a.k.a. the covering over my nerves in my extremities) I was infused on the 12th and 13th, had bad sinus allergies at the time, and saw my regular Doc after my infusion on the 13th and he told me to get Zyrtec D. I have had 4 instances of bad reactions with Gammagard since I was dx in 2007. 1st ocurrance it was run too fast and I experienced fast heart rate and a few days later, a bad headache, but it was caught pretty quick and the nurse dropped the rate way down for the rest of the infusion. 2nd occurance I got a bad batch and my right leg and foot (which has the most permanent nerve damage) felt like someone put it in the colest icy water ever...it hurt so bad and I had 2 heating pads on it on high..not a good idea btw...the warmth cant be felt physically inside or outside but you can burn your skin without knowing it. I went to the hospital and they had to give me Morphine...it didnt even the touch this pain...they ended up having to give me dilated. 3rd occurance, It was run too fast, it was my fault though...I had other plans made and asked my nurse if we could go a little faster because I usually tolerate well. Learned my lesson there! I had the worst migraine from hell..I was in tears. **Which brings me to this infusion...had to do an early a.m. infusion bcuz I had a Dr. appt. for my sinus' at Noon and my nurse was late getting here so we started later than planned. I forgot to take my prednisone steroid and took only 1/2 of the IV Benadryl amount b/cuz I didnt want to be too sleepy at my appt. I did take my Excedrin Migraine too. We probably ran it just a little quicker but not much than usual...my side effects have always presented 3-4 days after an infusion when I have had them. A slight headache and fairly bad fatigue is the norm for me, pre and post taking of antihistamines, steroids and migraine meds work like a charm for me usually and I thank God for that after seeing what some of you go through, I feel so so sry for you guys! Especially the kids...the story of the 11 year old boy breaks my heart that he has to go through all those terribly painful side effects! ...yesterday I had increased headache (that I attributed it to sinus headache), and terrible neck and shoulder muscle pain on the right side into the shoulder blade, but my back hurt everywhere (I am use to lower back pain bcuz I have degenerative disk disease in my L5-S1) I was also getting more frequent, intense leg cramps in my upper front right thigh. Nothing was helping for the pain with the neck, back and thigh cramps so I took one flexeril muscle relaxant and it helped, enough for me to sleep anyway. BUT TODAY...the muscle shoulder pain was gone but the neck and the back pain on either side of my entire length of the spine was unbearable... especially dead center between my shoulder blades. By 10:00 p.m. I couldnt take it anymore and knew I wouldnt be able to sleep with the pain anyway, so I took 40 mg. of Prednisone steroid....by 2:20 a.m. no relief, so I took 2 Norco and a Zyrtec D and Im just now getting a bit of relief. Its still there but tolerable, at least for now. ***QUESTION: from everything I researched I think these side effects along with others I have are probably Asceptic Menengitis. But from what Ive read, I dont think its all that worrisome...it seems to me having sinus allergies (not an infection) at the time of my infusion was why it presented and like the lady said above, her Doc told her it is common for IVIG to cause inflammation of the meningies. If I went to the hospital, they would have to do a spinal tap and if they find white cells in my spinal fluid, they will pump me full of anti-biotics and cortisteriods "just in case" while I wait 72 hours for a culture to develop, or not, telling me if its bacterial or viral (Aseptic). If its viral I get sent home. Anti-biotics dont do anything for viral cases anyway! Just more liver and kidney stress for nothing. If IVIG is known to cause  Asceptic Meningitis, isnt it ok for me to just take my steroids, zyrtec and pain meds? I saw one article said that everybody has probably had Asceptic Meningitis at one time or another following a flu bug. I just really really dont want to be stuck in a hospital for 3 days if I dont need to. I guess I will go if the pain gets too bad but ugh! ***AND YES*** ive been experiencing hair loss for years! Ive asked my regular Md about it a few times and he attributed it to age (Im 44) pre menopausal symptoms. But the hair loss is ridiculous!! My hair strands are everywhere and it looks like a small rodent has died in my shower drain at the end of my shower! I had alot of hair (thank goodness) and its long so nobody seems to notice how it is thinning. I am definitely gonna mention it to the makers of Gammagard and to my Specialist!! Yes to bowel problems also. I now have joint pain in both my elbows that presented a few months ago and is painful whenever I move my arms. I do have to agree with the ppl that say they are better off with the tx even having to deal with the side effects! I would be in a wheelchair with no use of my feet, legs, arms or hands right now. My disorder was progressing fast but luckily I was dx within 6 mos. and some damage was reversed and this tx is all that is keeping it from progressing again. It was truly a miracle for me!

It seems to me that all we hear from doctors with this tx is drink more water...water, water, water...and clearly sometimes its not enough, If fluids is such a big part of stopping serious side effects and its needed for healthy kidney and liver function, why isnt it included in the tx's? Why dont they infuse IV fluids for a half hour before and a half hour after and also tell us to drink more water? Just saying...how much does a bag of water with electrolytes and minerals cost? Ya know? Seems like it would help alot.

I have been on IVIG for five years now and have recently noticed that I am experiencing lower back pain and some joint pain. I am wondering if some of this is related to the IVIG (Gammagaurd), or if it is related to the fact that I am getting older (66 now) If it is related to the IVIG, does any one have any suggestions for relief?  I feel fortunate that these are the only side effects (If in fact they are side effects) that I have experienced. It has slowed me down a bit, but not much.

Thanks

I have just discovered this site and believe it will be very helpful to me.  Three years ago I had sepsis induced by pneumonia and was on life support for 9 days.  Survival at all was doubtful, loss of kidneys a concern, but I emerged with lung damage. (I did have a diagnosis of mild COPD previous to this, but with no symptoms.)  My result was a lung function of about 25%, pulmonary rehab, many upper respiratory infections and 3 hospitalizations.  During the last and never ending sinus infection for which there was no antibiotic left for me due to allergic reactions or having become resistant, I was put on a pic line for 3 weeks.  During that time I asked to have my blood checked to see if I had any immunities.  It all came back with indications that I was minimal in the g subclass and IVIG for CVID was recommended.  I had my first infusion a week ago with some fairly mild side effects of headache, body aches, and extreme fatique.  My Dr. is going to premedicate next time (28) days with Benedryl and tylenol.  I am caught between 2 worlds as I also see a homeopath who has tried to build my immune system in a more natural way...not working.  I guess my question and I do not really understand, is what is actually happening inside the body during and after an infusion.  Are the side effects because the antibodies are fighting against weaknesses?  I keep reading everything I can get my hands on, but never arrive at a simple explanation of what is happening.  It would seem a toxic situation is produced.  Any information appreciated.  I am a 68 year old woman who up until 3 years ago could do anything!

Hello everyone.  I just had my first IVIG infusion of Carimune a week ago today.  I have been diagnosed with CVID and I also have fibromyalgia.  I had a headache that was tolerable (I premedicated with zantac and zyrtec plus lots of fluids).  I find myself with very bad chills and joint pain and fatigue still a week after the infusion. Noted, I was just diagnosed with another sinus infection yesterday and started small dose of prednisone and amoxycillin (the infection never really goes away). I can't tell if I am sick because of the infection or still having side effects from the infusion. The pain in my joints is new. I am better than I was yesterday, but trying to tease apart what is caused by what is nuts.  My doctor said side effects from an infusion should be over within 72 hours.  Yet I have read here that some of you are sick for much longer than that.  Also, can someone please tell me how the infusions have helped them?  I am a bit in the wilderness here.  Thanks for any information any of you may shed on this.  I confess to being overwhelmed by getting a CVID diagnosis after already being very sick with cfs/fibro for 26 years.  But at least I know why I get all these blasted sinus infections that leave me as knocked out.  

I took IVIG for almost two yrs, but the side effects never fully went away, no matter what we did, so I got fed up, going to the hospital infusion center once a month, being so sick for many days, so======
I quit.
  so far it's been two months with no treatments, and my igg levels are very low (500, and dropping).  My dr says that for me, the infusions are "just a bandaid" and by stopping eventually pneumonia or something simular will "take me out".
  so far since oct 2013 I've had 3 pneumonias, & no antibiotic has,  worked  I'm tired of being sick , has anyone heard of others in my  situation?     God knows everything and is in control

Hi, try 2 weeks of being super sick after an IV!  3 days of being sick?  I would take it.  My first 2 infusions with Gammaguard were great.  I do saline, Benadryl, and Tylenol.  My reactions happen that night but really kick in 72 hours in.  This time, I broke out in a full body rash all over, super high blood pressure, heart rate of 130 and this is a week after the IVIG.  It's crazy.  I was so excited for this diagnosis of CVID.  Now I am scratching my head.

I am going to try a more experienced immuno but I am nervous with this treatment.  Hizentra made me SICKER than a dog.

So far, I have had no benefits of feeling better.  I feel much worse and I almost feel poisoned by it.  My fibro pain goes nuts from the Gammaguard.  The 3rd infusion, I had to be put on prednisone for 4 days due to rash and pain.  Yesterday, my rash was biopsies.  This is just not right.

I want this posted so that if others don't do well on IVIG, they know they are not alone.  It's very hard and scary.  

Hi Holly

Could you tell me what dose you had and what the flow rate was when
you had a reaction 72hours later

thanks Karen

Hi Karen, it was run slowly.  3 grams per hour, supposedly 25 grams in total.  Only received 18 grams due to side effects.

Hello everyone. I've been reading posts and thought I would join in. I was diagnosed with PIDD Nov '13. Tomorrow will be my 18th treatment. I do subQ once a wk.after my first treatment I had a slight headache/nausea.I do premedicate.side effects for me are as unpredictable as the weather. I ALWAYS feel crappy Mon. & Tues, that's a given. Best way I can describe it is a general feeling of being unwell.achy,sluggish, my belly feels weird and swollen.by Tues. night, that starts letting up. From Wed-Sun it varies. One wk I may feel good, the next I can hardly get around.I especially am having pain in my hip and ankles. Don't know if this is related to the Hizentra or a totally different problem. My good news is, that although I have had 4 sinus infections since starting trtmnt, they DID NOT go to my lungs.I have copd never smoked, asthma, cfs, fibromyalgia, chronic pancreatitis, erosive esophagitis. Had no idea of my deficiency until Nov.13. Do any of you feel strange, thinking about so many people's blood products being in your body?  I try to not look too far ahead, thinking I have to do this the rest of my life. I too have had periods of denial, anxiety. Thanks everyone for being open about your experiences and for listening to me.

Hi, all--
Like a lot of posters, I'm so grateful to have found this blog. I've had four infusions so far, beginning about a year after I was diagnosed with SLL (small b-cell lymphocytic lymphoma), which is apparently an 'indolent' form of lymphoma that is more common in people with auto-immune issues. I have MS, fibromyalgia, asthma, diabetes, and chronic sinus infections, so I guess I was a sitting duck.
I don't have terrible side effects from the infusions--though I might not notice them if they did, since they're so similar to fibro symptoms anyway!--except for significant hair loss. I can't stand the thought of losing my hair. I was on the verge of dying it white and black, to make the dull salt and pepper a bit more interesting, but now I don't dare.
If anyone has any ideas for help with this, I would be *extremely* grateful. I know it's not serious, but there's very little left of my body to like or enjoy; I can't go out for walks or do much of anything. I'd be so pleased even to lessen the hair loss, if I could.
In the meantime, many thanks, and lots of good luck wishes to everyone.

Diagnosed with chronic lymphocytic leukemia in 2005 and started Rituxan monthly infusions in 2012. No side effects noted. In December 2013 I developed bronchitis that went into pneumonia.  Thought I was having heart attack but ended up with lower lobe surgically removed.  Doctors decided that Rituxan treatment had killed bad cells and good cells so could no longer use.  In February 2014 I had first IVIG treatment....no headache BUT I've lost most of my hair.   None of the brochures acknowledge as side effect and doctors/nurses have not seen patient with this side effect.     I'm taking IVIG monthly and first 15 days after infusion my hair falls out and texture is awful.    HELP!    What should I do????

Also....I haven't had any colds, infections since having IVIG so I know it is helping my body, but would like to get my hair back!

Hi, new to the forum but not to IVIG. Diagnosed with CVID 12 years ago and have been getting monthly IVIG's ever since. Has anyone had problems with severe upper extremity flushing? My neck and face turn bright red and my skin gets hot. No itching. It normally happens at night. I am thinking it might be the flow rate which starts out at 60 and ends at 350. I get premeds, solumedrol, Tylenol and Benadryl.

Hi all, what a miracle to find this website. I thought my hair loss was related to IVIG but could not find anything about it on the medical sites. It is a small complaint compared to how much better I feel. Was diagnosed with CVID 4+ years ago. I was sick all the time...chronic bronchitis. I was on antibiotics 7-8 times a year for several years, along with massive doses of prednisone for weeks at a time just trying to get my asthma under control. Since I've been on IVIG, I've had bronchitis less than once per year. It's like a miracle.  I sometimes have headaches and fatigue, but rarely am down for more than a day. I feel very fortunate. I take benadryl and Tylenol 30 minutes before IV. And I sleep most of the treatment.  The first several years my rate had to be kept at 200cc / hour. But now I tolerate up to 350cc/hr. I get treatments every 28 days and feel so blessed my doctor diagnosed my condition. God bless you all. Katie

I am about to have my first IVIG Infusion to possibly control my hemolytic anemia, as steroids had no effect.

I have a pretty competent nurse and don't have as many side effects as I've seen posted here. My biggest issue is fatigue. I'm just wore out all the time and never feel full of energy. For the first few days it feels like I'm stuck to the pillow in the morning. Then I'm just tired all day. I have some pain, but that's from the CIDP. I take tramadol and that just makes me unable to sleep at night. Which is funny because I'm so damn tired all the time. It's is effecting my work and personal life. I can't exercise and even doing stuff around the house is exhausting. Is there any way to counteract the fatigue? In tired of being tired.

Like Mike, I have a very competent nursing staff at the "infusion center" where I receive my infusions. I feel I have been very fortunate having been diagnosed with CVID when I was 60 years old (not 10 years old as a friend's granddaughter) and starting treatment within 45 days after confirmation of the diagnosis by Mayo and CDC. But, also like Mike the IG fatigue has haunted me. I don't seem to have many of the other side effects, some joint discomfort and a bit of GI issues, but it is the fatigue that is the hardest thing for me. I am a very active person and have been in good health (excepting sinus issues that triggered my diagnosis)right up to my diagnosis. I am a swimmer and have been for 25 years. I continue this exercise, but I have cut back on the time in the water and the level of my exertion. I remain very active and the fatigue is difficult to deal with. It has effected my voice (I have been a singer nearly all of my life) and I have had to step back from most of my solo work as I now sound like I am singing at three in the morning from a local bar, hoarse and limited range. On the other hand, I am very happy/fortunate to be alive, to have tx available and to have insurance that covers most of the high cost of this tx. I guess as we get older we all have health issues of some sort and this one is mine.

I am also tired all the time which is greatly affecting my job, am out sick alot. My immunologist does nit believe me, that the infusions make me tired and my employer is giving me a hardtime even though I am on fmla, she wants me to get disability but cannot if my doctor won't help me

I also had hair loss and alot of joint pain, my doctor still does not believe infusions cause any of this

Had my first infusion yesterday. It made me tired right away and I slept through the infusion process. Once I got home I had a bad headache, but it did not restrict activity. I took 2-two hour naps and slept through the night. Normal activity today, felling ok.

I have just recently started my first transfusion of IVIG for retinal degeneration and posterior uveitis. I had the the infusions for three days (3hours per day) and did not know what to expect, but my god the migraines are intense! I have also had stiffness in the neck (my head also feels too heavy, so have had to lie down a lot), sensitivity to light, aching muscles and very tired for at least three days afterwards.Thankfully I did not experience some of the other adverse side effects. Has anybody else had this treatment for visual problems like myself? Would love to hear how this has benefitted you or not.

Kim x

A young relative is scheduled to start infusions shortly, not sure what kind. This child is 8 and has more energy than any child I have ever seen.  He plays hard all day and is extremely active.  He is small for his age, but was very premature at birth, weighing only 1 lb.  Plus there are very short people in his family on both sides. Do any of you posting here know a young child who has had these infusions and how the treatments worked for them?  How they handled the side affects?  I am really scared for this little one, especially after reading all the comments on here.  

We have friends who have a now 13 year old granddaughter who was diagnosed with CVID when she was eight years old. She recently switched from IVIG to SCIV treatments to avoid the highs and lows between infusions. She also has struggled with fatigue and recently began home schooling as she was susceptible to the various illnesses at her school. She is a delightful young woman, bright and very positive, and an inspiration to all of us who know her. Her grandparents purchased a small (about the size of a match box)air purifier for her that she wears around her neck when she is going out among many people. Seems to be working for her. Remember, side effects vary a great deal from person to person. Best of luck with your little friend.

Saundra M Palmer,
Thank God for you posting what you did.  Six weeks ago I has thick long hair.  Today, I almost have none.  I'm 44 years old and was just diagnosed with PIDD.  Hizentra was prescribed and I did 5 weeks of it.  I started having joint pain and muscle stiffness, so my doctor has stopped it two weeks ago.  I'm hoping my levels will stay normal... Praying that I do not have to go back on it (but she says more than likely I will).  You are right- it's so depressing to lose your hair.  It's discouraging when your doctors say that it isn't likely that the treatment is causing it when I really believe it is the cause.  I feel blessed to have read your post.

Hello,

Has anyone suffered a severe reaction to SCIG. I believe I have a sensitivity to IGA and have had a severe rxn to multiple meds. Face numbness and exteremity numbness and weakness, increased heart rate and anxiety. This has been going on for almost two weeks. Does anyone know how long it will last? My doctor believes I should be over it now but I am still experienceing it. I am taking benedryl and it offers some relief. It is making me crazy with worry. I am working on switching back to IV Gammagad SD because of the low IGA. I reacted to Hizentra and Gammaked SC but never reacted to IV however was on IV for a year and did not react to Hizentra for 18 months and Gammaked for almost 2 years. I am just scared which doesn't help my aniexty.

I have CVID and was diagnosed a year ago.  I lived my whole life with infection after infection on steroids constantly to the point I have Avascular necrosis in both knees. I started IVIG therapy a year ago and I to have bad headaches, tired, ache, chills, fever just exhausted and sleep that night of infusion is the worst and next day kinda blah by the third day I am usually back to normal. One time it lasted longer, I find if I am fighting the start of an infection and receive my therapy I can't fight it and need antibiotics post infusion than better.  I premedicate three days before with claritin and tylenol and do the same 4 days post infusion. I think it has helped some.  Even with my symptoms receiving the IVIG infusions is the best thing that has ever happened I am only sick maybe once a month or every other month not every day or week of my life.  I have accepted that three days of feeling horrible for the rest of the month to feel great is all worth it!!
The reason we have such symptoms are our bodies just are overwhelmed we have no immunity and are receiving a large immune response in one dose its alot for our bodies to react to but thank goodness so many people in the world donate so that we can have as normal as a life as possible.
I have a very young daughter that has an even worse immune deficiency than I do and yes some day she will need similar treatments and if these treatments stop her from being ill evey day with an infection and stop her from having constant steroids that could lead her to AVN of her hip and knees and need a total hip or knee replacement before age 50 like me than it is all worth it!  I hope all the continued research will find a better cure for her diagnosis but if not I know from my experiences how to prepare her and help her through her journey of IVIG!  To everyone out there with symptoms remember how bad it can be without this medicine and if it helps us live a longer happier life I am appreciative!

Tammy, I ,  too have CVID and am receiving IVIG every 28 days.   Four years ago I had pneumonia and did not know it, and it went to Sepsis.  I woke up one morning unable to breathe, and somehow called 911.  I spent the next 10 days in ICU on a ventilator.  Attempts to take me off, were unsuccessful, and it was thought I would be in a ventilator care facility the rest of my life or loose organ by organ beginning with the kidneys and be on dialysis.  None of that happened.  At the third attempt to wean me from the vent, was successful, but my lungs  took a serious toll.  I continued to have upper respiratory infections that seemed to be sinus related.  Long story, but at one point when I was on a pic line daily for 3 weeks because I had become resistant to all the available oral antibiotics, I asked to have my blood drawn to see if I had any immune system.  Sure enough, ion big trouble!  I began IVIG 6 months ago, and have not had an upper respiratory infection nor a sinus infection since.  I did miss my infusion by a week this month due to a fall and dealing with a fracture, and I found in being a week late, I had more side effect...headaches.  Typically, I am tired the day of the infusion, and a bit the following day, and also the few days before I am due in again.  I cannot believe the cost of these infusions, and am so blessed to have insurance that covers this.  I feel the small side effects I experience are small compared to the damage more upper respiratory infections create for my lungs.  I have only about 25% lung capacity/

I have PIDD and for the past year have been administering Hizentra SCIG myself at home.  At first I just had the normal redness and swelling at the infusion sites, and mild headaches as well as some muscle pain that was relieved with analgesics.
Now one year later I am having severe muscle pain and have been going to Physio weekly following the infusion and having acupuncture to try and relieve the muscle trigger points that appear to spasm and get bound down and even attach to the ribs.  I just get feeling better and then the next week it starts all over again,  My Physiotherapist and I are wondering if anyone else has experienced these side effects while taking Hizentra SCIG.  

Fatigue is also a huge factor but I am trying to exercise every morning, to see if this will help.

On a positive note, I did take all my supplies on a cruise in Europe and did two SCIG infusions which worked out so well.  One of the reasons I like SCIG is the freedom it give me to travel.  Having said that, the side effects are beginning to outweigh the benefits.  

It would be great to hear from anyone who has had a similar experience with muscle pain.

  

New to all this. but I am grateful to all of you and feel blessed to have found this site to give me an idea about how to prepare for IVIG. Since I already have 3 to 4 migraines a week, I'll be sure to take my fellow migrainers' advice and watch the flow rate when  I finally begin next week, after a lifetime of chronic sinusitis.
My question concerns insurance payments since I have not received any definitive information yet. I know plans greatly differ, but does anyone know if these treatments are covered by health insurance for PID? Thank you!

I began taking IGIVs August 2012. After having suffered through an entire year of chronic respiratory infections and seeing numerous doctors (most of whom were idiots) someone finally figured out that the infections were the product of an immunoglobulen G deficiency. Not a generalized deficiency but a deficiency in two sub classes. Many doctors (especially oncologists) have no idea that you can display a normal G panel while actually having no measurable levels of one or more of the four G sub classes. Whatever. An oncologist finally confirmed that I had multiple myeloma. Lucky me. It is likely that the myeloma caused the I-G deficiency. I am now spacing the IVIGs at around 5 weeks. I wash my hands a lot and I am getting by OK avoiding the infections. Unfortunately for the first year or so of taking the infusions I suffered reactions that were possibly worse than the respiratory infections. These reactions are difficult to describe but  included headaches, muscle aches, and a general malaise vaguely akin to flu-like symptoms. These symptoms commenced around 24 hours after the infusion and lasted approximately 7-8 days. This made my life miserable. My doctors had no suggestions. After doing various research (including scouring this blog) it occurred to me that my symptoms were akin to generalized rejection syndrome that occurs with  organ transplant patients. This makes sense because forcing your body to accept a foreign substance which was synthesized from human blood is not  unlike having an organ transplant. So I tried the following regimen: take two 20 mg hits of prednisone the day before the infusion; two more the day of the infusion and repeat for two days after the infusion. I have now done this  for two infusions. Small sample size but the results are manifest and not coincidental. Through both infusions the severity of my symptoms were reduced by approximately 60-75%; duration was reduced to around 2 days instead of 8.. These infusions are now bearable. I hope my report here helps others.

I have been getting IVIG every 28 days for CIPD for over 4 years. My rate of infusion has always been very high (350) since I had very little to no side effects. I don't take any premedication.  The last 3 months I have been getting extreme upper abdominal pain and nausea- getting worse each month. Has anyone else gotten this side effect after prolonged IVIG infusions? What do you do to avoid it?  I really don't want to slow down rate since it already takes 4 hours.

>>Missy and others with hair loss

I posted a while back that I was losing a lot of hair, and it was *very* depressing and scary. I told my docs, and they switched my brand from Octogam to Privigen, and the hair loss stopped. I was a bit more tired and achy with the Privigen, but it was worth it.
At the same time, I started making deep conditioner and other hair care products from organic fruit and veg, and that seems to help, too. My scalp is still very irritated--I tried one store-bought hair care product and was left after a single use with open, bleeding cracks in my scalp--but it's so so much better than it was.
If you want to follow that route, there are lots of great recipes on youtube and elsewhere for how to make stuff.
I would strongly urge anyone with hair loss problems to change product AND to start making your own hair care products whenever possible.

I was diagnosed with CVID in March 2014 and didn't start IVIG until June 2014 due to the lengthy wait for preauthorization from private insurance Regence Blue Cross. I was diagnosed with fibromyalgia in 1993 and in 2013 I began to have a lot of G.I. issues believing that I was lactose intolerant and gluten insensitive with at least two sinus infections every year. I have also suffered from debilitating low back SI joint pain and a right gluteus minimus tear from falls and after numerous visits to 9 different specialists resulting in over $40,000 in medical bills acquired in less than six months and while the doctors were trying to figure out the source of my pain a blood test revealed an almost zero IGG antibody level! My first two infusions were done through a private immunologist with the drug Carimmune which had to be infused at a very slow rate due to my history of side effects from synthetic drugs. The first infusion was nine hours and the second was six. When I transferred insurances to my husbands policy with Kaiser since I'm now on disability since January, my new immunologist was shocked to find out that Carimmune was still being used since it was taken off the market two years ago for causing kidney failure. I just had my third infusion with Flebogamma 35g/350ML in the outpatient hospital infusion center. Unfortunately I did not premedicate which may have contributed to my severe reaction when the flow rate exceeded 100. When it was increased to 125 I started to experience low back pain that became worse and spread from my tailbone to the back of my head to where I couldn't breathe and I was in a constant severe pain from the muscle spasms. I was then given an IV dose of Benadryl which rendered me inmobile and I was taken off the infusion for two hours until my symptoms subsided. It's now three days later and I still have a pounding headache, fatigue, joint pain and diarrhea. After reading all the other posts I'd like to confirm that I too have lost 50% of my hair volume since starting my first infusion three months ago! After my second infusion the next day I came down with bronchitis and it took a full month for me to recover. I do want to acknowledge after the first infusion after four days of experiencing the same side effects I did start to feel better and then the next three weeks were the best I've felt in about 10 years!  I'm hopeful that the IVIG therapy will help me lead a more healthier normal life however as a home health PT working with high-risk population of the elderly constantly being exposed to pneumonia I am being forced to go on disability because I am now deemed "unemployable" as well as doctors not being able to help with the chronic low back and hip pain. I believe I've had CVID long before I was diagnosed with fibromyalgia and wonder if in fact all the G.I. issues, fatigue and muscle pain is actually related to the CVID and not the fibromyalgia I was diagnosed with over 30 years ago!  I'm not ready to give up at age 55 so I'm looking forward to this blog and other readers helpful suggestions to make this life-saving treatment more tolerable.

I was recently diagnosed with multifocal motor neuropathy. I received my first IVIG tx 2 weeks ago. No side effects but elevated sgot and sgpt 1 week after tx. Has anyone had issues with liver enzymes elevating with these treatments?

I have been on IGG sub Q in home infusions for almost two years. My infusions have been a learning experience. I first tried the one dose infusion per month over 6 hours at the Infusion center and the side effects were to much for me even with pre-medications of Benadryl and Tylenol I still had flue like symptoms and migraines. Now that I am on sub Q I do my infusions at home twice a week for an hour and a half 25 g each treatment. I still get flue like symptoms but they are tolerable.

Just had my first dose of hizentra for CVID. I feel horrible day after. Does it get better?  I have read comments and would like to never do it again

Hello everyone! I have had peripheral neuropathy for about ten years. The cause is unknown. It is not caused by lupus, diabetes or other autoimmune disorder. I am missing IGG subclass 3, so my immunologist suggested ivig. I had several infusions of 30 grams, then one of 60 and one of 100. I weigh 50 kg. They want to increase it to 120 next time. Should I be concerned? I thought that the highest recommended dose was 2 grams per kg of weight. Thanks in advance!

Hello Lee, Currently there are two FDA approvals for the use of IVIg in treating neuropathy.  Gamunex-C and Gammaked are approved in the treatment of chronic inflammatory demyelinating polyneuropathy with a dosing protocol of 2gm/kg as a loading dose, followed by 1gm/kg every three weeks.  Gammagard Liquid is approved in the treatment of multifocal motor neuropathy with a dosing protocol of 0.5 to 2.4 gm/kg per month based on clinical response.   Not all physicians follow the FDA approved treatment protocols, rather they may use them as a guide to start therapy, and then titrate the dose (either up or down) based on how the patient responds to therapy.

Abbie Cornett
Patient Advocate
Ig Living

I'm with ivig for one year I stopped using it for taking other medicine for another try I was 1 month without ivig and I took it last time yesterday and I started to have join pain and muscles but after I stopped the ivig 1 month I had hair loss and with ivig I had growth hair soooo the hair loss is from ivig or what ???????

This comes up occasionally.  We have some patients who report hair loss, but at the same time, IVIg is sometimes used to treat hairloss (alopecia areata).  I haven't been able to find anything concrete about IVIg and hair loss. I would recommend speaking with your physician.  If you have any other question please feel free to contact me

Abbie Cornett
Patient Advocate
Ig Living

I am receiving IVIG for partial DiGeorge Syndrome- I am 48 and was diagnosed with Ramsay Hunt Syndrome about 2 and 1/2 years ago- Thankful for physicians who cared enough to dig to find out what was going on with me! Anyhow, presently doing IVIG every 2 weeks- I have side effects almost everytime- once in a while they are mild, but most wipe me out for a couple of days- Extreme fatigue, shortness of breath when I do try to do something, erratic emotions(crying/anger) although this could be from some of the premeds, aching leg pain that I can't get to stop with advil, Tylenol- fever, chills, redness, hotspots coming out on different spots of my body, and GI upset (severe heartburn is worst) I don't sleep well at night and am sometimes up all night, the night of my infusion- after that I crash! I had hairloss at the beginning but I believe it was from my disorder not the treatment- I had medium length hair and went to the hairdresser and just ask her to cut it off short- I started taking vitamins and with the treatments it has came back healthy again-So sorry you guys going thru some of the same, but it is nice to see I'm not alone because sometimes I feel it! I guess the facial disfigurement makes it worse, but people don't seem to understand- it's ok, I know it could always be worse, but I miss smiling!  I also miss being active- about the time I get to feeling back to normal it's time for another treatment- but overall it has helped me tremendously! my immediate family are wonderfully supportive! thanks for letting me vent! just had one this morning and am sitting here trying to go to sleep- Lol! lisab

I've been doing SCIG for about four months I was at 65mil a week I started having eye problems my Doctor cut me back to 50 mil this week I felt better the day after too! I hope it takes care of light sensitivity and sore eyes. I think it may be because I was getting too big of dose  

I was diagnosed when I was 9 years old, and I've been recieving the Gammunex for the last 13 years. I receive 60g's at a rate of 400... So it normally only takes me an hour and a half per infusion. Which I recieve every 4 weeks... I've never experienced any side effects, such as headaches, nausea, pain, swelling... Nothing. Normally the week before my infusion I start to feel weak and I find myself dragging around... But within 24 hours of getting it I feel amazing again. I'm sorry to hear that people are having negative effects from the ivig. However my experience since I was a child had been great. Overall I truly feel like this is helping me

Just started Hizentra SCIG about a month ago.  I was one week post op from cataract surgery.  Five days later I now have been diagnosed with Retinal Skesis.  Separation of layers of the retina.  There is no treatment for it.  My cataract surgeon had dilated me before surgery and didn't say there was a problem with my retina.  Does anyone know if this is possibly triggered by the Hizentra?  I have refused to do another treatment until I find out if the Hizentra can cause it.  Would appreciate any info you can give me.  I was only supposed to get 4 grams a week, but this just seems to weird it occurred so soon after the first treatment.  

This is in response to Linda Thornrose & Medicare. When ai was first diagnosed in 2009, I had a great job w a great benefits package from a major Corporation. After 2 visits to ICU, we determined how often I needed infusions and I had a home health service allowing me to do my two-day infusions at home. I was not able to return to work so was terminated a year later. I was told I had to go on Medicare at age 56 & found a Part D that covered my IV/IG. My neurologist said Medicare would not pay him for doing my infusions at his office center, I have stayed with my Home Health Care service & continue my infusions in comfort of my own home. I do have to pay a $500+ amount co-pay for each treatment to do this however. I much prefer this however, over an infusion center due to my compromised immune system.

I had severe headache following my first infusion of IVIG to prevent rejection following a double lung transplant.  I had pre-hydrated and taken benadryl and tylenol to no avail.  My friend suggested I try drinking coconut water.  I prehydrate with coconut water and high PH water for 2 days before, during and after and have experienced no headache.  I have experienced weight gain of around 7pounds the week after infusion.  

I am beem taking IVIG for 3 years. The nurses said they don't cause side effects the day after. I glad I found this website now at least I don't feel like I am crazy or hypocondriac !
I use ice on back of neck usually so weak it is hard to do anything for a couple days. I have very low igg and practically a non exsistance iga. I still got pnemonia once this past winter and have chronic sinus infections about every other month. Glad I am not alone!

I have been receiving Gamunex C for about 15 years now. I was diagnosed with PAN Vasculitis years ago. I have never experienced any major side effects until recently. My last two infusions have really set me back. Each infusion has put me down for almost 2 weeks. High BP, neck soreness, tons of head pressure, real hot on inside of body and chilled on outside but no fever, cramping in my legs, lightheaded, etc. It's been aweful. Has anyone ever experienced this problem after having so many infusions with no problems. May I also say that these problems have started after the company that sends my infusions changed company names. Any info is greatly appreciated.

I have been on ivig for 5 years my nurse is amazing really watches how I am and what I need I noticed when I slow down or stop for 30 min to hour and hydrate with iv fluids and take headache shot imitrex or maxalt and pre med and benedrly iv and Zofran and Tylenol
Through my treatment I do ok , it's the third day I have headaches if rate is increased it is your body remember everyone is different try a home care service I use maxim amazing people they care about a patient !
I ask for slow down and watch rate and infusion time .
I've used ice packs and heated blanket for cramps and life water has made a change high electrolytes and watch diet and better and les side affects after treatment.
Also I found on amazon migraine patches they cool ur head and take care of headaches they work 8 hours I use 2 boxes and cryopack ice packs for day and this all helps please try side affects are bad but when they get worse try Phenergan and go to sleep !
Blessing to all!

I have been wondering if anyone else have been dealing with being called an addict because of the pain I have been dealing with since I receive ivig every three weeks. I get sever headaches joint pain to were I can't walk and aseptic Meningitis from the ivig.  It is so hard for me to get the doctors to understand where I am coming from on any of this that I just wish I knew how to make them understand where I am coming from. Does anyone know how I feel or is having the same problems as me.

I have myasthenia Gravis and that is why I have to receive ivig. I have been receiving this for ten years and the past year and a half my headaches have been getting worse and worse as I said before I have been called a addict and everything else because the pain medicine doesn't help really. What helps these headaches and why are my systems getting worse.

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I'm an RN who administers IVGG.  I have had several patients who developed headaches during and after infusion.
The key to decreasing those side effects is slowing down the infusion before the headache gets worse.
If your nurse insists on running your infusion at a fast pace that causes a headache ,  she probably has more clients to see.   You can call the office who is supplying the nurse and tell them you'd like a nurse who is willing to take the time to deliver the med slower.  You shouldn't have to put up with headaches just because your nurse is rushed.
Most infusion company nurses have schedules that have pt's whose infusions run 1 to 2 hours, so they're going from pt to pt. A few nurses prefer be less mobile and cater to the pt's who have longer infusions.

Hi there
Just had my first ivig for low platelets.
I have had zero energy before and very weak and now I still have no energy, weak, mild flu symptoms.
Is this normal?  I'm 45 and my job is outside.  Needless to say that it isn't working out so well.  How long will this last?  Any info helps.  
Thanks

Hey Scott, from my experience yes, that is normal, but I do think it gets better with time- I have been on IVIG now for about 2-3 years- was taking monthly then had to go to every 2-3 weeks- I drag for about 3-4 days afterwards (sometimes feel worse after treatment, than I did before treatment) but it varies and from what I've researched and read most say it differs with every treatment- most of mine have been the same symptoms, but at times worse than others- (aching, especially long bones like my legs, chills, fever, flushing, weak, tired) a couple of times a head ache has occurred- I am 48 and work full time- I have to say it is hard at times to work- but I am inside so I know I have it easier than you- pre and post hydration seems to help me and they have added Lasix at the end of my treatment and that has seemed to help with the weird feelings in my head and confusion at times- I hope it gets better for you, but I think it helps to vent and talk with someone who understands because others just look at a normal looking person and wonder what is wrong or that you're lazy or a complainer - take care! lisa

Hello Scott, It is normal to have low energy levels and flu like symptoms after an infusion.  As far as how long  the symptoms last, everyone is different but usually can last up to a week.  You need to make sure you get plenty of rest and drink plenty of fluids before and after the infusion.

i get an infusion every 3 weeks and get the headache, body aches and pretty well sleep for 2-3 days after.  Is there things I should do or not do in between so I can have at least 2 good weeks?  Do I push myself to do as much as possible or do things not too strenuous?

Anyone receiving Ivig for Stiff Man Syndrome  (SPS)

I had my first experience with IVIG, Jan 2015 in the hospital for 5 days, they had to stop on day 4, side effects of nausea, headache & feeling like I was burning with fever, even though I didn't have one. My Dr. Prescribed 5 day home infusions once a month for the duration of the year. The first infusion was in March, I pre medicated with prednisone, benadryll & acetometaphine each day 1 hour before infusion. As each day progressed, the rate had to be slowed, as sooner & sooner I couldn't handle the side effects. I kept telling the nurse I was getting to dehydrated, even though I was drinking continuously, I had to urinate every 5-10 minutes. She said sometimes the Dr. Will order a bottle of fluids to be administered IV along with the IVIG, I made it through the March infusions, with residual flu like symptoms. The next round In April was horrible. Again each day the rate had to be slowed down more everyday till it was at the lowest rate on the final day. Again I complained that I was dehydrating & said to the nurse, you see how much I am drinking & I keep running to the bathroom every 5 minutes & I have no saliva in my mouth & my lips were sticking together. Again I was told that sometimes the Dr. orders fluid by IV & they would talk to him. This time after the infusions, I was totally drained & completely exhausted. I could barely get out of bed & when I did, if I needed to go to another room to get something,when I got back, I felt like I did 8 hours of hard labor. My infusion was Mon - Fri on Monday I felt even worse, I knew the next day I had to go to the hospital for pre procedure testing for a procedure I was having Friday of that week & wondered, how would I summon up the strength to get in a shower, shave etc & make it there. Tuesday it took all I could muster to get myself together, don't ask me how I did it. I got my testing done,went home, was resting & it's the scheduler for my procedure, telling me that the testing showed my potassium level was critically low & I needed to get to the emergency room stat. I was given IV for dehydration & also potassium IV, which is extremely painfull. I was pissed, because this all could have been prevented, if the nurse would have listened to ms, when I told her I was extremely dehydrated & had made the Dr. Aware so I would have the IV fluids I needed. I never got another infusion as the insurance company refused to pay for any more infusions saying, they don't pay for them with my  Dr's diagnosis. My hair started falling out after the first home infusion in March & is still falling out more rapidly now in August, I am about ready to just buzz it all off. If I run my fingers thru my hair, 15 to 20 hairs come out each & everytime. I totally believe the hair fall is from the IVIG. I never had hair fall out before IVIG & my meds stayed the same. IVIG was the only change.

Sierra,

Sometimes our docs forget we have more than one medical problem going on that can be affected by ivig. If you already were a migraine suffered you will have migraines after an infusion. And it might not be immediately. It might be days afterwards. If you have any type of autoimmune disease, it will respond in some way. Arthritis will worsen. Hashimoto's Disease will go a little wonky.

So you have to think in terms of a selection of meds that can help you through. If your migraine med didn't work and you've taken all you can take, ask your Neurologist what to do then. Not necessarily a pain med. Mine knows I take neurontin in that situation and he's all for it. He doesn't know why it works after the migraine med, but he's not surprised. Neurontin was prescribed for *me* for fibromyalgia and cervical disc degeneration, which always flare after infusion anyway. So it was in my grab bag of non-narcotic treatments. It may NOT be right for you and you MUST consult your doc about it. I'm just giving a PERSONAL example of how I was able to manage pain *and* assure my medical team that there was no drug seeking going on. After all, their licenses and practices depend on them following prescribing guidelines. If we help them they'll help us.

Be well. I know sometimes it seems almost hopeless. I'm having a bad reaction myself right now. But talking to you seemed to make me feel a little better. So thanks for sharing your story. It lets us know we're not alone out here.
Jennifer

I am sitting outside today enjoying a beautiful day, because, if indoors I would have taken another nap. Instead I pushed through drowsiness and boredom. This is my third week off work since my August 7th sub q of Hizentra. I ended up in the emergency room with adverse reactions of migraine, vomiting, vertigo, dizziness, left side weakness and off balance. I have not been able to drive and at times stand and/or walk alone. Three doctor visits later including MRI of my brain and it still points back to treatment. I have history of migraines that we pre treat before and after infusion. Almost week past infusion day and I can tell even though there are still some residual effects goino on. My IgG levels are up from ten months ago. How do I get past the dread of how my body will react from a medication I apparently need. IVIG infusion in January took about seven hours to complete, less than 12 hours I had severe reactions, put me outta work for seven days and ER visit gone bad. June 12th was a bad episode. Three times my body has been rebelled severely and I'm torn.

Hi everyone! This is my first time here. I had my infusion on Friday and all seemed to go well until I entered the car. I started with a bad headache, took Tylenol when I got home 10 minutes later and within an hour had 102+ fever, chills, headache and neck pain resulting in my having to go to the ER and get IV Toradol, Phenergan, Reglan and Benadryl. Fell asleep for over an hour and was then able to go home. This is the second product this happened to me on. The first was Gammaguard and this was Gammaked. Only Privigen did I not have this problem, but my doctor says it costs them too much $$$!! Anyone have similar experiences? Thanks, Sandy

Hi,
Had my first at home subQ Hizentra last week.  only took 4grams over 4 hours.  Had same experience as Scott above, dead tired, fluish, weak, GI disturbance, achy, insomnia, ect.  All symptoms I live with daily, just worse.  Lasted 5 days but really took its toll.  I am wondering if I am going to do this if I should just do IVIG once monthly and get it over with rather than weekly. Also, I read this medical literature suggesting IM 2CC per week is sufficient CFIDS/Fibro, does anyone have any experience with this?  click on link, then read sidebar #3

www.jacobteitelbaum.com/.../...infections_cfs.html

good article. I never knew there are two types of anaphylaxis reactions. I had my infusion last week and I wanted to get more information on it. I'm glad I stopped by.

Hey guys, I've got a question about the fevers. Does benadryl help with fevers caused by the infusions?

The long story is my husband is 33 and has CVID, he just had his first infusion 5 days ago on Wednesday but went through a bad reaction that put him in the ER the same day (uncontrollable fever, vomiting, exhaustion, extremely pale, high heart rate, and sever full body aches). After all the medications they gave him to stabilize him, he was released that night. Thursday he felt fine but his mother who was with us while he was in the hospital was ill and bold faced lied to us about it and instead called up crying Thursday to explain she had a fever and pnumonia, which my husband was hospitalized with for a week two months ago and is what hits him the hardest out of all infections, needless to say I'm beyond pissed... Because of his CVID, he hasn't been able to fully get rid of the pnumonia from two months ago and still has residual symptoms such as wheezing, rattling in the lungs, coughing up green gunk, and exhaustion.

The problem we are having now is on top of those symptoms that he's had for two months, we've been fighting a fever since Friday. It's been controllable and hasn't gotten higher that 102, he also gets bouts of nausia and migraines that go away with Excedrin. We did a 50 mg benadry test and it had no effect. I'm not sure if this means we are fighting a fever from infection or if it's a reaction from the infusions. We do have a doctors appointment Monday, but any help would be appreciated. Thank you!

Hello,

I have an autoimmune condition called Ankylosing Spondilitis, it's an inflammatory degenerative disease of the joints.  My doctor recently prescribed Hizentra, an Immuno Gobuoin therapy. I was wondering if anyone out there is using this type of therapy for autoimmune conditions instead of a weakened immune system. I am in a lot of pain and terrified. I'm getting a lot of conflicting messages about treating AS with Hizentra.  Please help

Hello Caitlin.  There is a good Chance that the fever is due to infection, since the infusion was 5 days ago.  Any infusion related fevers should have subsided by now.  Tylenol, aspirin, or ibuprofen are all good for reducing fevers, but if there is concern of infection, I would recommend a follow up appointment with the physician as soon as possible.

Hi Crystal,

I too am taking it for auto immune disease ... I have dermatomyositis.  So far I've only had two infusions. I haven't noticed physical relief in symptoms yet but my blood work shows improvement. My first infusion was horrible. I barely finished Before they close down for day. My husband had to drive me home. I slept for 15hrs straight. Had horrible headaches and felt like I had flu for 4 days and had lupus like rash on my face. 2nd treatment was perfect! I made it through infusion. Had one headache and was only mildly tired. All because they slowed rate (and because I had pizza night before)

I'm noticing hair loss

Hello Everyone,

Getting admitted to hospital today and starting my 5 days of treatment for CIDP.  A bit nervous as I don't know what to expect. I'm glad I found this site.  I did learn from here to stay hydrated so I'm drinking lots of water.  I will report on my experiences.
Debra

Anyone experience with weekly 0.4 g/kg longterm?
Normally for my disease the treatment is 0.4 g/kg monthly, but that doesn't seem to work for me. I have to get it every week now, for years, but I am afraid of the possible thrombotic side effects, like heart-attack or stroke.
Isn't the way ivig makes your blood hyperviscosis a cummulative one, so the more often you get it, the thicker the blood?

Does anyone get this high dose too?
Should I watch my diet? I like to eat something fat in time to time, but now I think I shouldn't.

I was diagnosed with dermatomyositis a year ago. I had a bad flare in December with Cks peaking at 5100. I started IVIG therapy 14 days ago ad have developed a measles like rash on my arms and legs. Has anyone had this reaction before?

I have hair loss, but it is from my autoimmune disorder. Using Nioxon shampoo makes a world of difference.

I mainly use my stomach for my sub-q Hizentra infusions. I have been on the sub-q form since 2006. I am now having left lower abdominal tenderness and sever pain at times. My CT scan is fine. Has anybody else had this problem?

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Good day. Just had my first round of IVIG this past week 4 days in a row. The treatment is for Dermatomyocitis. I am not sure what a measles like rash looks like but Dermatomyocitis has a rash associated with it. The rash itself has been with me for 10 years.
My question is concerning the cleaning of the infusion. Do I have any chance of being infected by a viral agent not removed from the processing of the treatment? And can I pass this onto my spouse?

To Anthony Denny, I  too have Stiff Man Syndrome.  With Baclofen,  and Diazapam everyday. I am fine. I am also on IVIG three days in a row every four weeks. 4 bottles per day. Side effects yes, headaches, fever, chills, and body aches. I found out that the lower the pump rate, the easier the side effects. I start off at 75 for 1st bottle and 100 last 3 bottles. My nurses are very good awesome. I also found out the key, is hydrating with water, before and after.  Very rare. 1 in a million. God Bless you

Let's all hang in there for each other. God Bless every one

I've been doing IVIG for 2 years now. I have Multifocal Motor Neuropathy (MMN). I did have a problem initially with blisters on hands & feet from Privigen IVIG but after talking to my doc I was switched to Gammagard and it's been great since. One thing I've noticed is joint pain. Typically hips, knees, and ankles. Sometimes wrists and elbows. If I sit for more than an hour the hip will start to bother me a lot. Fortunately I have a pretty good boss and he's cool with me getting up and walking around a bit so I can go back to work. On the plus side I'm walking 13 - 17 miles a day. As long as I stay active I can keep the pain tolerable.

I had my 1st treatment of iVIG in December for 3 days.  Side Effects were pretty bad, but all the normal things that I read about on here.  My CIDP symptoms have started to return about a 1.5months ago and I'm going back to see Neurologist tomorrow.  About the end of February, on a Monday, I experienced a sharp pain in my upper right side abdomen (more on my side right under/on the ribs) whenever I would cough, sneeze or laugh.  I went to the ER because I thought maybe gallbladder or something.  Chest x-ray and CBC came back "normal".  The Dr. said it was probably muscle strain.  I didn't really go for that because I hadn't done anything strenuous.  Anyway, that coming Thursday, I started feeling sick and left work about noon. By the time I got home, I had fever, aches, chills, etc (all the common flu symptoms), but the one thing that concerned me was everytime I would cough, the same pain over my rib would explode with pain.  I can't describe it, but I was in tears.  After about 4 hours, I went back to the ER.  The pain over my ribs was really concerning to me.  I told the ER staff, that I thought I had the flu, but something was up with the pain over my side.  More blood work, abdominal ultrasound, and another chest x-ray was done.  The blood work came back with "abnormal WBC counts", so they gave me a consult to Rheumotology.  All other tests came back inconclusive, and the Flu test was done, which came back positive (which I had suspected).  Meanwhile, the pain in my side has continued and is now constant, although cough, laugh or sneeze (causes the pain to be worse) exasperates the pain.  I'm writing all this on this forum because now I'm wondering if I could possibly have Osteomyelitis in my rib from the IVIG.  Has anyone had this experience.  Sorry, this is so long but want to give as much info as possible.  I'm also getting a new CBC panel done tomorrow before I see the neurologist.

Yes, Chris Jones (and others) -- my husband, 55, was diagnosed last year with CVID, is having a terrible time. It all started out in January 2015 with what we thought was a stomach virus that he couldn't kick. He lost 50 lbs in 2 months. Six months later, they diagnosed the CVID.  He struggled with the infusion treatments, and by December, was basically home, severely exhausted, he has now having diarrhea every other day with cramping almost every day, and it doesn't appear to be related to the treatments. He has missed weeks of work. Of course, he is refusing to drink as much as I ask him to, and because he sleeps all day while I'm at work, he isn't eating sufficiently or taking supplements. He just went to a GI, and we are hopeful something will help. Also, we are looking for a new physician to help with the insomnia and any fatigue that is depression related. He sleeps for a couple of hours, and then is awake the rest of the night. I think that is adrenal related, but don't know what kind of physician to go to. Any suggestions will be appreciated.

Hello Jan.  I am happy to help you.  Please email me at acornett@igliving.com
Abbie Cornett
Patient Advocate

Jan,
I'm sorry you and your husband having to go thru this- if you feel your husband's adrenal is related he probably needs to see an endocrinologist, but sounds like he has a lot of different things  going on unrelated to the treatments- a good primary physician should help- maybe they could find an antidepressant to help, if not find a good psychiatrist to help- (no different than going to see a heart doctor or GI doctor- alot of people refuse to see a psych, but they can be very helpful in getting the right meds- glad he seeing GI MD-  hope you all find something out- I have CVID also, have dealt with severe fatigue and depression.  It does take a toll on you and your spouse- I hope you all get some answers~

I head diagnosed with CVID almost a year ago. I did SubQ Gammagard infusions every 6 days at home for 7 months. Because of continual infections, my immuno and I decided to try switching to another product:  weekly  SubQ Hizentra. I've only done 2 infusions so far. I've had terrible hip, knee and ankle pain..... Could this be related? I'm also suffering from prednisone withdrawal after almost constant high doses over a year's time. I thought the joint pain could be a result of the steroid withdrawal. Now I'm confused. This disease terrifies me. I cannot believe how much my life has changed.

Hello Carol.  I will be happy to help answer some of your questions.  Please email me at acornett@igliving.com.

Abbie Cornett
Patient Advocate
IG Living

I just took my first infusion last Friday. No one told me about drinking the water until I was in the middle of the infusion. I had a horrible headache for 3 days and started with what felt like a bladder infection 2 days ago. I have had nonstop pain in the lower right side of my abdomen all evening. Has anyone heard of these problems as side effects? Thanks for any input.

Hello Dren,The more water you drink the better. The side effects will always be there but not as bad. Also have them reduce the rate that is pushed through the IV. This is the main problem. They started me out over 300 and now I start the first bottle at 75, and the last three at 100 for the day. I have treatment every month, 3 days in a row and four bottles per day. God Bless you

Thank you Karliss. If I continue with the treatments I will be sure to drink the water and have them give me the infusion slower. God bless you too.

Dren, your headaches may be a result of the IVIG product you are on. I experienced severe headaches and nausea when on Flebogamma. I requested to be switched to gammaplex as I was informed by a home infusion company that gammaplex patients reported fewer side effects like headaches and the manufacturer offers significant copay assistance. My neurologist approved the change and I have had 3 months of infusions including the initial five days with no sever headaches or nausea.

Thanks, Lloyd. I will talk to my doctor about this. The headaches and the dizziness have just eased up a week later but my appetite is still gone. Hopefully some changes can be made for the next infusion.

I had my 1st IVIG treatment in April. I get 3 treatments a month. The 1st treatmeny was done on a Thursday, Friday, Monday all ran for 7 hours.  I took benadryl and Tylenol before and every 4-6 hours and drink lots of fluids.  I experienced a slight headache but nothing serious.  

After my 1st treatment, everything went down hill from there. Since the 1st session of treatments went well we decided to do 3 consecutive days and to speed up the treatments to 4-6 hours for the next 2 months. I experienced pretty much all the side effects including hair loss.  My doctor prescribed dexamethasone to get rid of the migraine and all the other aches an pains. Now, this month we are trying a different brand of IVIG.  Will also take a steroid drugs and fluids before treatments and I'm scheduled to do the treatments Thursday,Friday, Monday and back to 7 hours.  Seems like time is very important with these treatments but I just hope and pray I don't have another moment where I experience so many side effects because I don't think I can take going through this every month.  

I'm so scared. I start Hizentra next week. I've hard pneumonia 4x in 2 yrs. very bad back injury and diabetic. Getting depressed and worried about all these side effects. Don't want to lose my job. So expensive. Is my life over??

Hi Lisa,

It seems everything will be a test or a trail and error period depending on your body and how it handles things. My doctor switch my brand since I last posted. I originally started on Gammagard and now Privigen. My dosage have been split in half and treatments given other day, every 2 weeks and so far it's been ok. Still experience some side effects but not as bad. I'm praying it gets better and despite all I've been through, I try to stay positive. Definitely not easy.

My advice to you would be not to stress or worry about something that hasn't happen yet. Everyones body is different. I've heard some people do well with these treatments. Just pray and remain positive. Hopefully things will go well and you will have little to no side effects.

Hi does anyone else gave Good Syndrome? Thanks for all the advice and info , I am going for my first Immunoglobulin infusion as soon as the medical aid approves it and I am a bit concerned about the side effects ... I am praying I don't have any , will drink plenty of water now that I know too !

Is it possible for IVIg to not work at all? I have CIDP...Chronic Inflammatory Demylenating Polyneuropathy...and this has been my second month and I see NO improvement AT ALL and I have severe headaches, nausea, vomiting and the back of my neck has been in such pain since I started this I'm wondering if it's normal. Any advice! God bless you ALL!

It may be that they are running the infusion too fast. I had to have mine run very slowly. Are they pre-medicating you with Tylenol and IV Benedryl  before the infusion.  It took months for me to tell a difference.  I am now on Sub-q infusions that I do myself.  It has reduced my side effects immensely.  

Regina it is always possible that IVIG wont work.  However you need to give it more time. Sometimes takes 3-6 months before you see an improvement.   If you have any questions please feel free to email me at acornett@igliving.com  I am the Patient Advocate for IG Living magazine.

Abbie Cornett

I met with my neurologist today for a follow up after receiving monthly IVIG infusions for 6 consecutive months only to be informed that he wants to cease the infusions for two months to determine if my MMN has stabilized. I have experienced what I consider significant improvement in my severally atrophied left hand not to mention improvement in the numbness in the toes of both feet. I am concerned that by not receiving IG infusions for two months will result in loss of the positive progress I have made over the past 6 months.  Has anyone had their neurologist suspend IVIG infusions for this purpose?

Can Ivig cause cold sore virus in eyes and also can it slow down the healing of the virus if not stoped. And if stoped how long should this virus lady if I am on amoxicillin drops 4 times daily , 6 Valacyclovir 500mg tab daily, and 60mg prednisone for a week then tapering, by 10mg , so I am on 30 mg of prenizone as we speak, they put me on oral cause it was thinning my cornea. Also putting lacrilube ointment every hour . Have had this for 5 weeks cloudy vision  can't drive .

Hello,

I am new to IVIG.  I just finished 5 consecutive days of infusions where I had the most severe headache that would stop me in my tracks.  My neck and back were stiff and pain shot down my back if I bent my head forward.  The Dr. stated it can cause Meningitis and gave me a shot of Toradol and a steroid dose pack.  The Toradol did not help so I took some Phenergan that I had from a few weeks earlier. That seemed to help more than anything.  My infusions take about 3 hours.  Now that I have finished my 5 days, I am supposed to go back every 3 weeks for 2 consecutive treatments.  They know I have some type of autoimmune disorder but can't determine which one, but I am also immune deficient.  So far I have not notice any changes, but they said to give it a good 3 months.  I notice that a lot of people state that their infusions take 7 hours or longer and I'm just wondering if my dose is low, or if they are infusing it too fast.  I really don't want to go through all these symptoms every 3 weeks if I can help it.  I stay hydrated and try to rest, but have to work as well.  Any tips would be greatly appreciated.

After a 6yr hiatus I'm back on IVIG. I was in my early 30s when I started and therefore think I tolerated the side effects better. Being in my mid 40s now it's very much harder in my body. What I'm wondering is if anyone else has the chills all the time. They are bad the night of the infusion but still continue weeks later. I'm on 40grams infused over 6 hours so I think it's slow enough. Of course my Dr says none of his patients complain of side effects lol

I am new to IVIG treatments and have had 4 treatments so far! I do feel somewhat better in general, but I've gained about 23 lbs in the 4 months! I've also experienced horrible low back, knee and ankle pain, hair loss and with the last infusion I've had a horrible migraine for 3 days! They continue to slow the rate of delivery.

After the first infusion I felt a push of energy that lasted about 10 days. I have not felt energized since, so am a lot frustrated and depressed! Has anyone else had this experience!

Hanging in there as best I can!

I have been receiving get sciv since July 2016.
I have been fortunate that I do not have to premeditate, I have no side effects that I can't tell. I take Gamunex-C

Minor Ig side effects, such as headache during the infusion, hypotension/hypertension, rash, and flu-like symptoms are common but can be alleviated with hydration and premedication with analgesics and antihistamines. Usually slowing the infusion will prevent these. More moderate side effects such a anaphylactoid reactions that, unlike anaphylactic reactions, are worrisome but not serious will resolve on their own but I would administer a corticosteroid intravenously that would reverse it in a matter of minutes. The important point here is that you should be able to receive your Ig therapy with NO side effects. That often means switching brands of IVIG or changing to subcutaneous therapy. When my patients would have side effects, in all but a few cases, I found ways to prevent them and in those few cases, if the patient would have been willing to go on subcutaneous therapy I am confident that would have worked. You need to have the conversation with your physician and nurse/pharmacist to get them to try all the various options out there to prevent side effects. Every product is different and some are just better in terms of side effects. A lot of patients receiving a 10% IVIG product have found that switching to a 5% product helps as well. Let me know if I can help.

I have had IVIG since 1999. I am now 64.  I have been getting my treatments at the doctors infusion center. I always get the aseptic meningitis after with vomiting, dry heaves.  The nurse supervisor said well take Tylenol and if that doesn't help call me on my pager. She didn't answer and by the time I got ahold of her I was throwing up. I end up in er or urgent care to get Toradol. I  have asked them to slow the rate down. All they did was cut the dose into two days but kept the rate at 150. I finally transferred to my local hospital. Cut the rate down to 58 over two days. Still got a bad headache this morning and took the Decadron. That is what I don't want to take as all the side effects from it and I already have osteoporosis. Wondering if SQ injections would be better?

How long can these headaches last?  On the 3rd or 4th day, I woke up with a horrible headache.  My last treatment for this month was Friday and I'm still having a small headache.  It's definitely treatable, I'm just curious how long this will continue.

Shelia,
The rate of the IVIG infusion can very definitely have an effect on how you feel after the infusion. Many people will do much better and have fewer side effects (like headaches) if the infusion is run at a much slower rate. Other things that can help is premedicating with Tylenol and benedryl prior to treatment.  Hydration is also a very important part of reducing side effects. Many people will hydrate by drinking lots of fluids before, during and after treatment but also get additional IV fluids as well. Please discuss the IV rate with your nurse or your doctor and ask them what the rate is and ask if them if slowing the rate could help decrease your side effects. Some people don't tolerate a rate over 100 and some can't tolerate a rate over 50. I hope this information helps. Also read the post that others have posted. There is a lot of valuable information here. Best of luck and feel better.

I am 71 and diagnosed with CVID last November following bilateral streptococcal pneumonia and sepsis.  I had my first IVIG in January and within 12 hours developed an inflammed pelvis which left me immobile.  I virtually could not move without severe pain.  On the 3rd day my doctor prescribed Prednisone which reduced the pain over a 7 day period.  4 weeks later I had my second treatment.  Within 48 hours I developed (what felt like a pulled muscle) in the front of my left leg from the knee to the groin area.  I was limping and couldn't stand for more that a few minutes. Doctor prescribed Prednisone again but the leg discomfort never completely left.  We then switched to 1/2 dose of IVIG every other week with a 7 day supply of Prednisone.  It ended up being my best experience.  I just had my 4th treatment yesterday, and so far I have the leg discomfort but it is liveable.  My doctor feels there is no correlation between my complaints and the IVIG treatment even though it has consistently happened after every treatment with no history of these symptoms.  I even went to an Orthopedist who verified there is no orthopedic reason for my complaints.  Has anyone experienced these side effects and if they have, how was it treated?

I have CIDP and have Infusions once a month and have mild headaches daily but the worse symptom is itchy sore forming in spots on my hands and body.  Does anyone else have these sores and what to put on them. Thank you Al

Hi Al,

Are you taking any steroids, like Prednisone?

Yeah, I take steroids, for 7 years now, 20 mg/day. (Hate the stuff).
I get ivig 800 mg/kg every 2 weeks.

I have been at an 80 mg dose of Gammunex every month over about 4 hours and I get severe migraines 2 days post infusion. I get pre-meds and 125 mg of solumedrol post infusion. I have been instructed to take 30 mg of prednisone for my post headaches by my doctor and that I should keep taking prednisone every 6 hours if the headaches persist. My concern is that I am taking too many steroids and that it will have a long term effect on my body.

Does anyone know if there are alternatives to steroids to help with the migraines?

I was diagnosed with CVID about 3 years ago.  I received 6 doses of Hizentra sub-q and got a blood clot.  I had minor side effects with weight gain.  Infusions were stopped because of clot.  Went through two total knee replacements and later several blot clots at one time.  Now, I am on blood thinner, Xarelto, for the rest of my life.  Now, they started me back on SCIG infusions of Cuvitru every two weeks.  First treatment, I got severe migraine headache after 4 days that lasted for about 24 hours and spent most of the day in bed.  I had drunk lots of water before, during and after infusion.  Still had a minor headache for 2 more days.  Before second infusion, it was suggested I take Tylenol before.  I also used ice on injection cites that helped with redness and pain.  Yesterday, 3 days after  2nd infusion, I had lower back pain.  It is better today.  I have had a rash and itching since 1st infusion, but it is hard to say if it is related to infusions as I have a history of many skin cancers (like over 50 surgeries) and hundreds frozen.  I still have a rash on my stomach that hasn't gone away.  How do we know when our symptoms are related to infusions or our CVID?  

You said very well. Your content very helpful in my medical study assignment. Thanks to share these with us. You inform very deeply about is the benefits and side effect.  

Hi have just been recently diagnosed with CIPD and started on IVIG (Privigen) can anyone tell me if light sensitivity is a side affect, just seems my eyes are very sensitive to light since starting treatment???

I just started IVIg August 10, 2017 for CIDP.  The loading dose was to be over 5 consecutive days, but my reactions were so severe, they were spread out and it took 15 days. I now get 2 days every 3 weeks (was supposed to be 1 day every 3 wks, but I need it to go so slowly, it takes 2 days.)

My headaches were so bad (10 out of 10 on pain scale, vomiting and inability to keep food and liquids down) that we pre-med with tylenol, benedryl 50 mg IV, and 40 mg prednisone for 2 days before, 30 mg on 2 infusion days and taper for 4 days after. I still get an 8 or 9 out of 10 headache with vomiting, and if I don't get IV fluids, I can't eat anything but saltines for a week. Been to ER a few times for fluids. It helps but I can't keep doing that.  I am now down to 95 pounds and my doctor doesn't seem to care.  Anyone else have such severe reactions?  I was on Gammagard. Am now on Gamunex C which is better.

Hi Terry,  

I'm sorry that you have been going through so much. When I first started IVIG about a year ago, I too was back and fourth to the ER with Flu like symptoms as well as  severe migraines.

I was on Gammagard and my doctor switched me to Privigen. I get it once a week now over a period of 7 hours with steroids and fluids before hand. The key is to hydrate yourself with lots of fluids the day before, during and the day afterwards. In addition I also drink Gatorade as well during my infusion. I also take Benadryl and Tylenol throughout (every 4 to 6 hours). It's a lot but it helps. I was glad the brand of IVIG was switched because that helped a lot.

I know it's a lot to do but it helps a lot for me. Now I just regular drink a lot of water daily. I would say anywhere from 70 oz - 85 oz a day and if I start to not feel well, I'll have some  Pedialyte or Gatorade. It seems from time to time with this stuff we'll tend to lack some  electrolytes. Well I hope telling my story helps. If you have any questions, please feel free to ask. Best wishes.

I, too, had a really bad reaction to Gammagard. When my Dr wanted to keep me on it because he got a good price on it, I decided to go on home infusion and am now on Privigen every 3 weeks with no more trips to the ER so far. A nurse stays with me all day and I don't need to be exposed to so many other potentially sick people in less than comfortable circumstances in the Dr's office!

Hi All,
I have been following this blog since the beginning of this year (2017).  After having been Dx late in 2016 with acute then chronic EBV & B19 Human Parvovirus, my immunologist also Dx with CVID.  In addition, my endocrinologist diagnosd me with Hashimoto’s anfd thus year my blood sugar went into the type II diabetes zone & lastly I was told I have adrenal Disease now...partly due to a well documented adenoma on mynleft adrenal gland, which they have been watching closely for changes as it is 1.5cm.  The other reason for adrenal Disease & probably just burn out is years of high stress then the stress of failing health despite my attempts at eating clean, exercise, yoga, etc....
In any case, I strated Octagam 5% every 3 weeks.  I started mid Feb this year.  I get frequent UTI and kidney infections.  I have had several boughts of H Pylori as well as several other bacterial infections that mostly attack my digest system & renal/bladder.  I had a lot of GI, reproductive & severe UTI issues since early adulthood.  The CVID Dx took decades as I am now 47 & have had 3 major abdominal Sx not including multiple laparoscopic surgeries.  I had a complete hysterectomy in 2006.  
So I am noticing that the day of my treatment, which is delivered in 3 1/2 to 4 hours, I start feeling fatigued.  The day after, I feel continued fatigue thta seems to worsen.  I begin getting muscle aches & weekness.  My saving grace there is that I do have pain meds to help because of nerve damage from the adbominal surgeries, endometriosis & continued adhesions.  I also now have a 1.7cm lesion on my S1 joint so on bad days that also causes pian.  But by day 2-3 post treatment, I get an intense migraine accompanied with a stiffness
feeling in my neck.  This leads to nausea, sometimes vomiting, extreme weakness & fatigue.  These symptoms go on to day 4, sometimes 5, post treatment.  
I was researching some other blogs & it appears a handful of other infusion patients also experience similar and the same symptoms & are talking about a more adverse side effect they call aseptic meningitis.  I drink plenty of fluids regularly & increase this before, during & after treatments.  I add in electrolytes as well.  I have done premedication with allergy
meds.  But that actually made me feel worse.  So I stick with fluids & certain teas, supplements.  But the truth is, each treatment is making me sicker, faster & for longer.  I also work full time, fortunately my employer is very kind & works with me through the struggles.  I don’t see my immunologist for follow up appt until Jan.  I have 1 or 2 more treatments between now & then.  
Is anyone else having these types of symptoms?  If so, what are you doing that works?  I will only add that despite the treatments, the infections I am getting have actually become more frequent & severe.  
Thanks for listening🙂💕

Hi cristaline. I am having the same problem with IVIG. I also have a lot of the same issues as you. I’m teyjng to figure out what to do. Today is day 4 post infusion and although I stopped the prednisone yesterday morning I wound up getting the reaction return! I have heard that switching to SCIG helps keep me posted.
Mel

I have tried both and if anything my CIDP is worse and that’s after a year on it so I pray it works for y’all. God bless. Regina Dickson

I have been having IVIG infusions for 4 years now. I have premeds of Zofran , Benedryl, solumedrol, and Prilosec. I still get side effects at night . My rate is 250 right now but they may need to lower it again. I had to stop my treatment today because of reactions, naseua, lower back pain,  flushing, and headache. Once I had rigors that was bad, and they had to give me demerol to stop it. I now have to have that with me every time just in case.
I am wondering if anyone has leg pains and weakness the night of the infusion? It is terrible .  

I've now been getting IVIG for six years and every time I have either to stop the infusion because of severe headache, spinal pain, palpitations with increased blood pressure.  I get Tylenol, steroid iv, Benadryl as premedication and I'm given the IVIG at a very slow rate over seven hours or eight.  The nurses usually can restart the infusion after stopping it and either giving more Benadryl, steroid and ant acid.  I usually have to take Norco for severe joint, bone pain for almost two weeks out from infusion.   I have deficiency in producing antibodies and a second auto immune pemphigoid with causes blisters in my mouth.  
My inflammation is increased in joints and now am dealing with degenerate disc disease which seems like has worsened with IVIG infusions.   Does anyone have similar symptoms?   The other symptom that comes and stays longer is the spinal nerve pain, with sweats, chills, sunburning skin and pealing of skin. Worst peeling on feet and right lower lip.  

Hi RuthAnn,

People have experience different symptoms due to IVIG but my infusion last about the same as yours and my entire IVIG premed routine seem to be the same. Steroids, fluids and Tylenol and Benadryl.  I had to work with my doctor and find something that works for me. You may need to try cutting your dosage in half and still get them over a longer period of time.  I get my IVIG infusion once a week over 6 hours. With 1 hour fluids. Total 7 hours.

Also have your doctor considered changing the brand. That also helped me as well. I started on Privigen then went to Gammagard. Big difference in headaches but I still get them. I take Topamax at night for my headaches because they would never go away. Since I’ve been taken that I can say I’ve had headache free days. It’s been a long road before we found what works. I’ve kept journals about how I felt daily and what meds worked and didn’t. Tried several different things before getting to this point. So it’s going to be almost 4 years since I’ve started IVIG.

Also, I have back issues but had them before IVIG but it’s due to my condition. Hope this helps.

I have been IVIG for quite awhile. Started with gamunex in IV formula but after 2+ years I had an anaphylaxis reaction. Epi is no fun guys. We tried several other version of SCIG but I didn’t tolerate (rash, itching, nausea, pain). We went to Hizentra and I had problems fatigue being a big one but premeds (Benadryl, famotidine, Tylenol) helped control for the most part itching. Then Medicare wouldn’t cover it since I got it in the clinic and my primary won’t cover it at home but wouldn’t matter as doctor doesn’t want me to o it at home since I have so many problems with infusions and had the anaphylaxis reaction before. So now we are doing gammaguard and I feel horrible. I have always had bad fatigue regardless of the drug but normally 2 days and it’s let up some but not now. I also have been having horrible horrible itching and nausea. Lasting almost full week so by the time it’s letting up it’s time for next treatment since I go in weekly. They were giving me hydroxizine shot during the infusion which killed the itching but they thought that was causing all the nausea and fatigue as possible OD of that medicine since I take a small dose of it nightly for an antihistamine. But we didn’t give it to me this week and I have been so sick. I have even been running low temp after infusions since switching to gammaguard. The BIG side effect that nobody ever mentioned but I asked about and nurse said several patients are complaining about besides me and that doctor believes it is a side effect though drug companies don’t put in literature is HAIR LOSS. Not a little but lots. I swear it looks like a hair monster on the drain when I’m in shower and wash my hair. I even stopped washing my hair daily and wash 2-3 times a week. It comes out and fills my brush every time I brush it out and throughout the day I pick it off my clothes, and everywhere else I sit, stand, cook, etc. I feel like I’m going bald. I have cut 10 inches off the length in last 7 months hoping to help my hair condition with no help. It didn’t seem to be this bad when I was on the IV version but since going to SCIG it seems worse. I take hair skin nail vitamins, bariatric multivitamins, vitamin E and extra biotin and none of that is helping. Also my nails have started getting thinner too. If I didn’t know this kept me from getting sicker I would quit. So frustrated.

Can someone please tell me what difference hydration makes when doing Hizentra subq?

A week or so after IVIG (once a month) when the prednisone has worn off, etc I get a terrible headache. It's just about clockwork too. Is that normal I wonder? It makes for some tough workdays.

@Ken Getting headache, during and after IVIG is very normal for some. That is one of the side effects.  The prednisone of course helps to suppress that. Before, during and after IVIG be sure to drink plenty of fluid. The headache can be a pain.  They are still really bad for me. I went through a lot. I changed brands of IVIG from Gammagard to Privigen. Now I’m getting Fluids and a steroid before the start of my infusion(IVIG). I also take Tylenol & Benadryl throughout that day. In addition staying hydrated on my own and I drink a Gatorade. I’m also taking additional meds for the headache at night such as Topamax and just lowered the dosage of that and started Emgality but I don’t think it’s working. I think IVIG is watering it down. Making it less effective. I’m also on a low dose of prednisone daily.  I hope this helps.

Just had an IVIG infusion this week to treat pemphigus/pemphigoid. The medication used was gammaguard. Infused over two days. I had the predicted headache . The 3rd day I broke out in a horrible raised rash on my back ,chest,arms, legs. The dr put me on Prednisone. Not sure if I should continue with this treatment?  I’m scheduled for another 2 day infusion next month. Not sure what to do.

@Halyna, Sorry to hear about your troubles. I hope you feel better soon. Gammagard was the first IVIG  brand I started on and it didn’t work well for me. It gave me really bad headaches/migraines to the point I was in and out the hospital. So I was switch to Privigen. Regardless before any IVIG infusion the day before and during its best to drink plenty of water. I also drink a Gatorade on the day of my infusion. I also take Tylenol and Benadryl before and throughout the day of the infusion as well. In addition I’m also prescribed fluids and steroids right before we starts. It’s a lot but it helps. Furthermore, always discussion with the doctor your options that works best for you. Prednisone has lots of side effects.  It helps but I would stay on a low dosage. Hope this information helps.

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On my 2nd treatment ,  but 5 days after still having aches and fatigue.