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Posted on 2. August 2012

IVIG: You're Not Alone

By Ronale Tucker Rhodes, MS

“Does anyone know of others in (fill in city and state here) who are being treated with IVIG?” That is the type of question that appears from time to time in my daily Google alerts that keep me abreast of news on the topic of intravenous immune globulin (IVIG). Of course, this is a person who is desperately trying to connect with others like them. And, I often wonder after I read these questions, “Did they find someone?”

If I told you there are a lot more people out there like you than you could ever imagine, would you believe me? People who are ill enough to need IVIG to allow them to function daily or even to keep them alive? You may not have met anyone in your social circle, but you’d be surprised how much company you actually have. Here are some interesting facts:

Fact 1: IVIG is currently only approved by the FDA to treat six diseases. These include primary immunodeficiency (PIDD); immune thrombocytopenia purpura (ITP); chronic inflammatory demyelinating polyneuropathy (CIDP); multifocal motor neuropathy; B-cell lymphocytic leukemia; and Kawasaki syndrome.

Fact 2: But, the number of diseases that are not approved by the FDA to be treated with IVIG far exceeds the five listed above. This is because IVIG has been proven useful for many disease states, but manufacturers don’t pursue FDA approval because of the high cost of conducting clinical trials without the benefit of increased marketing advantages. Some diseases not approved by the FDA but commonly treated with IVIG are Guillain-Barré syndrome, polymyositis, dermatomyositis, stiff person syndrome, relapsing-remitting multiple sclerosis and pemphigus. And, anecdotal reports suggest IVIG is effective in treating autoimmune neutropenia, autoimmune hemolytic anemia, Evans syndrome and acquired hemophilia, especially when other therapeutic modalities fail.

Fact 3: In addition, in the not-too-distant future, it’s possible that IVIG may be used to treat even more diseases, including Alzheimer’s, secondary recurrent miscarriage, chronic regional pain syndrome (CRPS), rheumatoid arthritis, anti-neutrophil cytoplasmic antibody disorders, systemic sclerosis/scleroderma and Still’s disease.

Since becoming the editor of IG Living magazine, I’ve learned a great deal about the different types of chronic illness and that the names of these diseases are not just labels; instead, they represent individual human beings — moms, dads and kids — all of whom want to find others to share their experiences. Perhaps knowing which diseases are being treated with IVIG will allow you and others to find people just like you and them to connect with.

To comment on this blog scroll down. How have you reached out and connected with others within the IG community?

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Categories: Need to Know

Comments (109) -

thomas perry
8:49 AM on Friday, August 06, 2010

i have to do ivig treatments for cidp  with out i dont walk or  use my hands

anne joy
9:38 AM on Friday, August 06, 2010

Finally getting IVIG after 6 months of problems. For the  most part and confined to bed now, able to walk short distances in my apartment. Thank god.

susan watkins
9:54 AM on Friday, August 06, 2010


I have CVID.  Before I was diagnosed I was 59 and near death.  I have been on IVIG now for a year and my condition is much better.  It's not perfect for sure, but more than I could have imagined last year.

My insurance is trying to get me off it say that I am cured.  Anyone who has this disorder knows that there is no cure.  It's a ridulous thing to say let along to use that as an excuse to prevent me from getting treatment they will need to come up with something more clever, and I imagine that they will considering the breath taking costs of IVIG and treatment of patients with CVID and other autoimmune disorders.

If I were forced to stop my treatments now I would die within a year.  My own doctor has even told me that.  Even with IVIG I just got an infection withing the last couple of days which is being treated agressively with big guns antibiotics.  Once again, a year ago before my IVIG treatments I would most certainly been in the hospital with this UTI.  I have only been in the hospital once since beginning treatments. To me this is major improvement.  To others I'm sure it sounds like nothing, but for many CVID patients this is a big deal.

As IVIG becomes used more frequently for other conditions and insurance claims are filed I would think eventually the cost would go down as more would be made...  at least I hope.  

I know one thing for sure, we need to get more people to donate blood.  Did you know that it takes over twenty thousand donors to create one dose of IVIG to be used for CVID patients...  the numbers are breath taking.  On my good days I want to figure out ways to get folks to donate blood.  Maybe when I get better I will try to come up with something for my community.

Susan Giorgi-Branch
5:29 AM on Saturday, August 07, 2010

I live in RI and we have a support group going here and sometimes have speakers out to our meetings...

nynah mason
9:36 AM on Saturday, August 07, 2010


There are quite a few people in Southern California who are being treated with IVIG.  The range of diagnosis covers most if not all of the those mentioned in the above article.  I think it would be possible to have meetings on a quarterly basis if people were interested.  I have thought many times about this and wish I were "well" a larger percentage of the time and could commit to being a reliable organizer for such an undertaking (no pun intended).

thomas perry
8:51 PM on Monday, August 09, 2010

i live in southern california  long beach. iwould go to a quartely meting i do ivig for my cidp       my e mail is wrzkace @ gmail.com

Piper Redman
9:18 AM on Friday, August 13, 2010

My daughter has CIVD and has been using IVIG (sub-Q now) since 2 years of age.  We live in a small town outside of Dallas, TX.  I am always trying to find other kids for her to chat with that go through what she goes through. We are constantly searching through IDF, etc. for others like her because she gets frustrated more often than not about "being the only one that has to go through this and it isn't fair."  We always stay positive though!

Leta Smith
2:51 PM on Friday, August 20, 2010

I have LEMS or Lambert-Eaton Myasthenic Syndrome.  It is a rare form of myasthenia with symptoms similar to Myasthenia Gravis. My neurologist uses IvIg to treat Lems as well as myasthenia gravis and neuropathy.  I am not sure how many others. I went through the MDA penpal site and asked for a penpal of someone with LEMS.  I was referred to a Yahoo group for Lems.  It is wonderful to connect with someone who has the same disorder and to compare symptoms and treatments.  Even to share everyday troubles and triumphs.
IvIg has given me my mobility back.  I still have times when I am weak or easily fatigued, but I lead a somewhat normal life now after being nearly bedfast 5 years ago.  I have a port because my veins are not all that good and I receive my infusions in the dr office by his nurse who accesses my port once a month.
I wish everyone who needs it could get it. I am thankful to God for my doctor and the insurance company who enables me to have this.

MAURICIO ESTEVAN PERALTA
5:02 PM on Friday, September 03, 2010

Hi I am also thankful for IVIG Treatments I have had Polymyosities for eight year's and have been taken off the treatment only to become so weak that I would fall and need the help of a cane. I live in Barstow Cal. I too have to go to the dr. office and have the infussion once a month two days back to back for about five hours each day thank god for this medicine. Wondering how I got polymyocities? so thankful to be mobile...

Donna Vickroy
3:12 PM on Friday, September 10, 2010

Wondering if anyone else has switched from Vivaglobin (sqiv) to Hizentra?  I switched a couple weeks ago.  The infusion time is less, product needed is less, poke sites are 3, rather than 6.  I do need to pre-med for migraines but I did that for 6 or 7 months when I began Vivaglobin too.  What are your experiences with Hizentra?

susan watkins
4:41 PM on Friday, September 17, 2010


Calling all CVID patients in the Austin, Texas area.  I live in Georgetown Texas which is only about 25 miles north.  I get my treatments at the Dell Center Infusion center.  I have asked my nurse many times how many other CVID'er's are coming.  So far, only 1 that I know of.  Others do come for infusions but they are being treated for mostly rheumatory issues.   It's hard for me to believe that there are not lots more folks in this general area.  Houston doesn't count...  too far away.  But, anything within 50 miles of Austin I would love to hear from.  Having a real group would be so amazing.

thomas perry
6:06 AM on Saturday, September 18, 2010

i live  in a city of 500.000 and have never ran in to any one with cidp

susan watkins
3:25 PM on Saturday, September 18, 2010


Where do you live?  Have you tried to find anyone?  I'm not sure exactly how to go about looking, but I'm going to try once I get more energy... Smile.  According to the stats Ive read the incidence rate is one in 50,000.  If that were roughly true,it might mean you have as many as 9 or 10 in your area.  

Now they are saying it is such an under-diagnosed disorder that there must be thousands more of us out there.  All I know is I haven't met anyone yet, but maybe if I look a little harder...

thomas perry
4:28 PM on Saturday, September 18, 2010

i dont no where to look,  i cant go  to  my dr  and ask,  cause of privacy  and there are no cidp people left in my infusion ctr   the 2  people that were getting ivig  it didnt work so they are not going any more. ive got a couple of friends i met on face book but no one in  the city i live in.. any one got any ideas? how to meet people  in your area with the same disease...   thanks  tom

susan watkins
5:19 PM on Saturday, September 18, 2010

Hopefully some ideas will emerge.  I hadn't thought of the hippa thing.  I have my infusion on Monday and might ask my nurse for an idea.  Once in awhile I see ads in the papers for support groups, but now with the internet, I can't imagine why that would be any better than just hunting online.  

Anybody out there from central Texas?

Bruce Gibbs
5:42 PM on Tuesday, September 21, 2010

I have been on IVIG for almost three years now in Australia for IBM. It is the only treatment really that has any impact on this disease. I havea monthly infusion at the local hospital. It is provided free under the Australian Medicare scheme.
I have found it very beneficial. I am lucky and my IBM is proceeding slowly I believe that the IVIG is contributing to this.I feel better walking as soon as i get out of the hospital door. I have also lost the signs I did have of dysphygia.
I have had not side effects I know of except about half way through I get a slight head ache that a quick sleep fixes.    

.

Sherilyn
2:23 PM on Thursday, October 14, 2010

I have CVID. I get subcutaneous infusions every 4 weeks and hope to go to every 2 weeks so I get more umph.  I live in So. CA.

RE meetings you are talking about: Why not give your name to your nurse and tell her you are interested putting together a group meeting? She will either know of one, or you can ask her to check with others IVIG patients to see if there's any interest.  You can also have a sign up sheet ready for her.  Takes the work out of it for her.

Many hospitals, clinics, etc. are interested holding meetings for various illnesses with guest speakers, many of whom are physicians. You might call your hospital to check.

All things take drive (sigh) and stick-to-it-ness.  For those who are interested in doing this, it's a good thing we all get our infusions at varying times of the month! Smile

I'm just happy I can go outside! YAY!

thomas perry
11:27 PM on Thursday, October 14, 2010

Sherilyn  what part of so ca  do u live in?   i live in long beach, i go to an infusion center.  im the only one at that  gets treated for  cidp   or any chronic diseases.  it seems like alot of them are there for anti biotic or  like  iron. so the nurses really dont have no info but maybe  i should check  my insurance  blu shield and check for  support groups  are u on face book  ?  if u are   look me up Thomas g. perry  on facebook  always nice to meet people that i can relate  with  Take care   and thank you .Thomas perry

Catherine
9:04 AM on Friday, January 28, 2011

anyone from the Kansas/Missouri area?

susan watkins
6:15 AM on Saturday, January 29, 2011


Bruce Gibbs, You are getting IVIG for IBS?  Is that the main reason you are getting the infusions?  If we are talking about Inflamatory Bowel Disease that is something that could not happen in the United States.  I don't believe that anyone here could be treated with IVIG for IBS alone.  It is wonderful that it is helping you.  Previously, before my diagnosis, I had many, many intestinal problems and my gastro doctor just blew me off.  'oh it's all IBS, here take these pills, and don't get excited about anything'.  Paraphrasing of course, but that was the basic idea.  After he found out I had CVID he was a little more helpful, but I'm not too impressed.  I was one of those who kept having test after test, alot of them no fun I may add, and nothing ever showed up.  Nothing could explain my horrible pain and uncontrolable gut.  Does this sould familiar to you??  Please tell me, if you can what you went through to get properly diagnosed and treated.  I have a niece with terrible IG symptoms and she is currently on the road of trying to get a diagnosis.  Any info from someone other than me, might be believed.

Thanks for your time!!

Dorothy Witlin
4:02 PM on Wednesday, February 02, 2011

Just came across this site.  There is a post from Bruce Gibbs that caught my eye.  I, too, have Inclusion Body Myositis (IBM). I know it is a very rare disease and have not heard of anyone with it until now.  Would like to hear more about your case - as I am starting IVIG March 1,2011.  Thanks for a reply.

Bruce Gibbs
4:55 PM on Wednesday, February 02, 2011

Hi Dorothy, I have contacted a couple of people with Inclusion Body Myositis here in NSW. There is a local group with branches throughout Australia. I live in Port Macquarie NSW and receive IVIG monthly at Port Hospital. I find that it does give me a feeling of 'improvement' after I get up and go out again. But the long term impact seems the most important benefit to me. Whilst the progression of the disease in an individual person is specific to that person it seems, the fact that I have remained fairly stable since commencing the treatment in late 2007 is very encouraging in my case. I have lost some strength in my legs and climbing/descending stairs that requires a hand rail for me these days, but I am still able to do it, whereas as the 'norm' goes I would have deteriorated a lot further in the last 4 years so I put that down to getting IVIG regularly
Bruce

Amy M
9:36 AM on Friday, February 18, 2011

Susan Watkins- I'm also in Austin and relatively new to all of this.  I feel a bit overwhelmed trying to learn more about this!  
- Amy

Catherine
6:53 PM on Friday, February 18, 2011

Try one step at a time.Its overwhelming to all in the beginning I promise it will become much easier as time goes on.
B Healthy,Catherine

Susan Merrin
9:44 AM on Friday, March 04, 2011

Bruce and Dorothy,  Have either one of you tried the Myositis Association.  There are support groups and they could probably help you connect with others who are suffering from myositis as well.  Here is the website: http://www.myositis.org/template/index.cfm

I have a young grandson who recieved IVIG for over 2 years for Juvenile Dermatomyositis. It really helped him so much when he needed it most.

Tom, your doctor can't give you information about other patients, but if you leave your name and contact info they can pass it on for you.

Susan

Susan

molly
9:24 AM on Saturday, April 16, 2011

Hello there, I live near Toronto Ontario and was diagnosed with CIDP 2 years ago.  I am given IVIG every 3 weeks and can now function almost normally,  Still having issues with walking more than 10 minutes and feeling like there is gravel under my toes.\

I have a question for whoever could answer this.  If I was considering travelling to the USA or abroad to New Zealand, does anybody know if I could get IVIG there and would it be covered?

Any IVIGer's that live in the USA or internationally, is your IVIG covered by your health insurance.  My IVIG is but am concerned if I ever wanted to travel/move/retire, could I get it elsewhere with coverage??


One suggestion whoever is suffering with IVIG - make sure you listen to your body and stop whenever you feel fatigued.  Celebrate the good days and set small goals of what you wish to accomplish.  Enjoy the sunny days ahead.
Cheers
Mollly

molly
9:26 AM on Saturday, April 16, 2011

sorry, I meant, whoever is suffering with Chronic inflammatory demylinating polyneuropathy, not Ivig.

Sushil Mukherjee
1:52 PM on Wednesday, May 04, 2011

My wife (66 years old now) was diagonsed with Multiple Sclerosis 12 years ago and after having severe relapse 3/4 months ago, her Neurologist appeared to believe that she was suffering from CIDP and treated her with IVIg(30mg) infusions three times first two in one month interval and third time (April 26, 2011) in 2 weeks from the last monthly infusion. Since these infusions did not show any improvement at all, this treatment has been stopped. Does any one has similar condition?

Susan RI
5:22 AM on Thursday, May 05, 2011

I have heard that doctors have used IVIG to treat people with MS and have had good luck with it, I don't know of anyone personally that has MS but I am sure there are others out there

Syl
1:44 PM on Friday, September 02, 2011

I've been on IVIG since June 2008. I have had dx throughout the years of myasthenia gravis, Waldenstrohm's, MGUS, multifocal motor neuropathy and the latest being diffuse polyradiculoneuropathy diagnosed at Mayo Clinic in May 2011.  It is my lifeline to a normal life and I'm so fearful as I turn 65 Medicare will not cover the infusion as it is so very expensive.

Dorothy Witlin
2:51 PM on Friday, September 02, 2011

Hi Syl, I have been getting IVIG for the last 6 months. Medicare pays 80% and my secondary insurance pays 20%. I feel fortunate because I get IVIG 4 days every month and the cost is prohibitive. My veins are not doing well from the IVIG - they get hard usually after the 4th day.Dorothy

Donna Vickroy
7:07 PM on Friday, September 02, 2011

I just qualified for Medicare this month (turn 65 at the end of the month).  My (then) primary and (now) secondary insurance indicated that medicare covers 80% and UHC covers the other 20% so now I'll have no pharmacy bills at all, going forward.  We will see how true this is as the medication bills are sent first to Medicare.  Pharmacy confirmed that medicare covers 80%.  Good luck with your medications and your insurance.

courtney
2:04 AM on Thursday, September 15, 2011

Hi cathrine, this post is a few months late.. but I am from missouri... I have myositis but I'm not sure which one. Ill be starting ivig next week... anyone have any good advice for me?

thomas perry
10:17 AM on Saturday, September 17, 2011

i have met 3 people in my area that have cidp and we have met up and have a  little support group and a thread where we all talk to each other. it took 2 years but i found them .

jonathan mallapre
11:59 PM on Sunday, October 16, 2011

hi im jonathan from philippines.my son is 7 month old has an itp (immune thrombocythopenia).he take 6 vials cost 75000 pesos.after one month of follow up check.his platelet increase upto 414000 but now after after a month again his platelet is drop to 38000.again we need ivig for my son.but it is very expensive and we can,t afford.i hope there somebody there who have a good hearth to help us asap.thanks.becuase the doctor said that if the platelet counts drop in 10000,it is fatal. .i love love my son very much. .i hope god help us.

Gem
11:20 PM on Sunday, November 20, 2011

My 7yr old son was dx GBS before and now CIDP... we were required to have IVIG as well... the IVIG is very expensive we were quoted around 180-240 thousand Pesos just for the medication alone ( were also here from the Phils), unfortunately our Healthcare provider wont shoulder any single cent for this treatment due to some exclusions on the Sickness/Disease in their policy... It is really hard seeing your kid suffering and you cant do much... For now we opted for the Steroids (less expensive treatment) hoping that there would be a positive outcome.. if only IVIG is not that pricey...

Donna Vickroy
3:55 PM on Monday, June 04, 2012

@IVIG Treatments (Hizentra).  Shouldn't you just let your specialty pharmacy know that you have a supply and let them skip a shipment?  That's what I did when I missed a few over several weeks.  Ended up having a 3+ week supply extra and just held off receiving the following shipment.  Saved the insurance company about $20,000.  Just a thought.

Beth
10:45 PM on Tuesday, June 19, 2012

I have Multifocal Motor Neuropathy and have been treated with IVIG for 11 years with success but employer "lost" group insurance and I have to go individual and don't have $4000 deductible. Anyone else with MMN?

Linda Thornrose
5:35 PM on Thursday, August 02, 2012

I have been on IVIG for CVID for nearly eight years.  I live outside of Gainesville, Florida.  I not only don't know anyone with PIDD, my immunologist left the state about about 5 yrs ago.  Only one in the state and he is in Miami.  I have an oncologist overseeing my care.
At any rate, I have been having monthly treatments, covered by my insurance in my home!  What a wonderful blessing.  However, my husband retires this year and Medicare will become my primary payor.  They will not cover home care unless you are home bound!  I will have to drive an hour each way to get my treatments in my doctor's office or outpatient hospital...definitely costing Medicare more than home care.  Do any of you have Medicare?  Do  you have problems with it?
I am sorry, it sounds like I am grumbling, but I am truly grateful for IVIG and how it has made such a difference in my quality of life.  I have had a few pneumonias and bronchitis, and even an awful bout of Hepatitis A, plus chronic sinusitis, but overall, my health is much improved as far as infections go. I also suffer from fibromyalgia, chronic fatigue syndrome, arthritis, sleep apnea, (migraines greatly improved with use of CPAP for sleep issues) and some other things.  
I would love to have a support group. IG Living has been a very valuable resource.  However, like many of you, I feel very isolated with CVID & IVIG treatments.  I don't know anyone who has PIDD.  The treatments and dealing with the side effects have become fairly routine, but lonely.  It would be so good to share with someone in the same situation. I feel very blessed, but it would be so good to have someone to share with, to hear how they cope, solve problems, etc.  Anyone?  Online?  This blog has been a good thing to me.

Donna
6:21 AM on Friday, August 03, 2012

I have myasthenia gravis and receive ivig to mask the symptoms which has greatly changed the quality of my life for the better.  I have not met anyone with mg in the 5 years I have had the disease.  I live in the Dallas, TX area.  I am very concerned that Medicare will not cover the infusion in a few years when I am eligible for Medicare.  

Mavis Barnett
6:47 AM on Friday, August 03, 2012

My granddaughter living in Clearwater, Florida was diagnosed with CIDP 4/2012 and she will be two years old in August. We have not been able to locate anyone with a child this young that was diagnosed with CIDP. We were able to locate a local support group and have attended one of their quarterly meetings. She was getting IVIG every three weeks and it has been changed to every two weeks. My daughter decided to have a port placed as the last two times of treatment they were having a hard time to find a vein and it is so hard to listen to her screaming while they try to find a vein. The neuro has advised she will need to have the IVIG for the next year and does not know the prognosis for treatment. My daughter was able to contact Early Steps in the Clearwater area and my granddaughter will be receiving physical therapy on her legs as the lower extremities is what has been effective on her. She will walk if you hold her hands but other wise she will crawl a short distance then scoot on her bottom. Is there anyone that has hear of anyone having such a yound child with CIDP?

Patty Byers
10:18 AM on Friday, August 03, 2012

I am writing in answer to the article's final question, "How have you reached out and connected with others in the IG community?"

I am in my 60s and live in a very small town in AZ. I was diagnosed in 2008 (finally!) but had been unable to find an immunologist. Finally one moved here, but he was not willing to apply for the IG. Frustrated, I reached out to the web's Immune Deficiency Foundation (primaryimmune.org) and found an offering on their site to connect with the community of fellow sufferers (idffriends.org). Through the friends site, I put out a plaintive plea for help in AZ.

I now have a lovely best friend whom I've never yet met, Ellen, who encouraged me to seek the help I needed in Phoenix. Although it's a three hour drive for me, it was so worth it. I am eight weeks into my SCIG infusions, and already my counts and energy level are a lot better!

Without the web and my web friends, I would have literally been dead in the water. It's a great online world we live in!

michael
11:15 AM on Friday, August 03, 2012

I have been receiving IVIG treatments for over 8 years.  My diagnosis is Myasthenia gravis.  IVIG is an approved treatment under most plans (including medicare) for my diagnosis.  But I have to go to an infusion center for treatment and I am not eligible for subq treatments.  The treatments started every 2 weeks, but due to the progressive nature of my disease, they are now weekly treatments.  About 3 years ago they impanted a port in my chest to ease access.  The treatments are my lifeline.  I wish they would allow IVIG to be delivered at home, but I am grateful that I can continue to receive them anywhere.  Since I am on Medicare, but under 65 I am enrolled in Medicare Advantage plans to minimize my OOP costs.  But due to the cost the plans keep changing each year.  Hopefully, they will not all leave this county until I turn 65.

michael
11:23 AM on Friday, August 03, 2012

One other thing for those with MG and going on Medicare.  IVIG is covered under Medicare Part B.  80% coverage.  If you are turning 65 then you can look at Med Supp plans or Advantage plans for the other 20%.  Under 65, you are usually limited to the Advantage plans.

michael
11:24 AM on Friday, August 03, 2012

One other thing for those with MG and going on Medicare.  IVIG is covered under Medicare Part B.  80% coverage.  If you are turning 65 then you can look at Med Supp plans or Advantage plans for the other 20%.  Under 65, you are usually limited to the Advantage plans.

Colleen
12:24 PM on Friday, August 03, 2012

@Beth
I was diagnosed with MMN 2.5 years ago after 8 years of mystery symptoms. Despite a 5-day battery of testing at the Mayo Clinic, all of which except the EMG were normal, they are sure it's MMN. I've been on IVIg for the whole time. I don't see any improvement, but haven't lost any more function in the last 1.5 years.

Anyway, I was frustrated with the general lack of information and absence of interaction with other MMN patients--it is so rare. Unbelievably, here was an unfilled Internet niche! So I started the MMN Forum a year ago. We have over 100 members from all over the world. It is so wonderful to be able to compare notes and experiences with others in the same situation. I don't know if we're allowed to post URLs here, but if you google MMN Forum it'll turn up.

Since then another MMN patient has started two Facebook groups (one devoted to discussion of natural remedies).

Thomas perry
1:01 PM on Friday, August 03, 2012

There is quite a few pages on face book there are a few younger kids that I have seen on there go to face and put in cidp groups with my cidp I will be on ivig the rest of my life but I'm older 43  feel free to contact me my email,is wrzkace@me.com I have had cidp for 3 yrs Tom

Gail
2:16 PM on Friday, August 03, 2012

Hi, I have CVID and live in a suburb of Cleveland, Ohio. I get IVIG at my immunologist's office every 4 weeks. Anyone out there from Cleveland with CVID?

Susan
4:05 PM on Friday, August 03, 2012

to Linda Thornrose...  Please call me at 352-255-5023 or email to drsuzzoo@msn.com.  We just moved to Jacksonville.  I have CVID and have two adult daughters also who have CVID.  I would love to talk with you about life, doctors, treatment, etc.  We three get IVIG monthly currently at FL Hospital in Orlando and see an Oncologist/Hematologist as well.  Hope to hear from you soon.

Susan

Carla
7:00 AM on Saturday, August 04, 2012

Gail,

I am north of Dayton and have been receiving IVIG since 1996 for CVID. I have a wonderful immunologist and she has been my lifesaver. Hope you have a great doc in the Cleveland area but if not, let me know and I will ask my doc for some advice.

Carla

Carol
7:23 AM on Saturday, August 04, 2012

Hi, I live in Orlando, Fl., have PIDD and have had the subcutaneous infusion of Hicentra once a week.I have had the infusions for 4 years now.I have noticed the advancement of arthritis at a speedy rate and the cartilidge is gone in my feet and hands. Dr's say I have the feet of a ninety year old woman and I am only 62. Does anyone else notice this? Could the arthritis be a side effect of the condition and or the meds? Hope to hear from someone. Carol

Linda Thornrose
7:01 AM on Sunday, August 05, 2012

Hi Susan, I just had my infusion yesterday and will be resting today, with the usual headache & fatigue, so will crawl back into bed.  We are leaving for CA for two weeks on Friday with lots in between, but I do want to talk to you.  I may have to wait until I get back from vacation because I want to allow plenty of time to chat, OK?  I have appts every day thru Wednesday with only Thursday to get packed and ready.  I also have my elderly mother living with me who suffers from progressive dementia, so have my hands full getting her ready as well as my husband (who pretty much takes care of getting himself ready, praise the Lord!).  God bless and talk to you soon.  If you need me in the meantime, my number is 352-481-4136...just leave a message if I am not here.

jody kaler
10:35 AM on Sunday, August 05, 2012

I have cipd also lifelong ivig..without it barely get around

Linda Thornrose
10:33 PM on Sunday, August 05, 2012

Susan, I will call you, maybe tomorrow.  My mother is sick, so had to cancel our appts.

For any of you out there with long term IVIG, I highly recommend getting a port a cath!  Best decision I every made when I started the monthly infusions.  My veins were horrible, but my nurse usually has no problem with sticking me the first time she accesses the port.  I wouldn't have it any other way!

God bless all of you and I cannot say how much I am encouraged by all the comments, friendliness and helpful ideas all of you are sharing...and of course, the support.  What a big blessing to me!

jody kaler
10:10 AM on Thursday, August 09, 2012

Ive been trying for days to leave info..in detail..keep loosing it or doing wrong..hhelp  all have either been lost or ae somewhere.    Hello mu nane is jody i have cidp abd also never met anyone in the 13 yrs. I get ivig 3 days/ mo..8 hrs each..pretty decent dose. I have a partially paralyzed foot which i falll often because of so have all kinfds structual cervical/ lumbar disc prob and degeneration. Anyone may contact me a jlk.zenminded@gmail.com or call me 7723499677. I had to finally give up mu psychptherapy practice of 17 yrs abd been through death of my fiance who helpes me when needed to horrible.type brain cancer. I have been alone now for 3abd half years and need support abd human contact..and understanding. I THINK NOT HAVING the compasssion..and  understanding of those close to me as i havehad losses and furtur disability has left a hugh  hole in my heart.  I need to do self lo e to fill it..but surrounding oneself with pos. Like minded people builds immune ssystem.Dont be aroubd others or limit interaxtions with thise whi are toxic for your health  take car and god bless...jody k

Linda Thornrose
4:45 PM on Thursday, August 09, 2012

Hi Jody,
I am sorry that I don't have much time at this moment because we are leaving for a two week vacation tomorrow.  However, my heart goes out to you and I will surely be praying for you.  I, too, am new to this forum and look forward to mutual support and understanding for a shared chronic treatment/illness that not many have experienced.  I have not met anyone with the same health problem, but IG Living has always been a valuable resource.  This blog will be a great resource, too, I think.  I am so sorry you are hurting physically and emotionally.  All I can do at this point is share where I have gotten my strength over the years...it is my relationship with my Lord Jesus Christ.  I do not know what your beliefs are, but maybe you could reach out to a local church?  Just a suggestion because I know this is a very personal issue.  God bless you and I look forward to getting to know you more online.  I won't be online much if at all on vacation.  

RJ
2:39 PM on Tuesday, August 14, 2012

I called IDF, the immune deficiency foundation, to inquire about local support.

IDF matched me with a "buddy" who is not only local, but actually happens to get her IVIG at the same doctor's office that I do. I tell you, this relationship has been absolutely wonderful. She is such an inspiration to me, she has shared so much encouragement and information, and we have become very good friends--thank you Gina! I highly recommend getting matched with a buddy.

mary ann tate
11:49 AM on Friday, August 17, 2012

I have Myasthenia Gravis and have been getting IVIG for about 3 years every 4-6 weeks.  It keeps me out of bed and functioning fairly well most of the time.  I do get a headache after each infusion no matter how hydrated I stay before during and after. Does anyone have any suggestions on how to avoid this headache.

Linda Thornrose
3:17 PM on Friday, August 24, 2012

Susan, Sorry I haven't called yet.  We left for two weeks vacation after Mom got well and just returned late last night.  I look forward to talking to you, too.  Please don't give up on me!
God Bless,
Linda Thornrose

DEBORAH SCLAFANI-TOSKI
12:15 PM on Friday, September 07, 2012

My daughter was diagnoised about 4 years ago and she now lives in Houston , Texas. She is in denial and does not want anyone to know about
her illness. I am in New Orleans, La. away from her since she is now in
college.Any patients in Houston for her to chat with, she really has no friends(left them behind at LSU) and I feel she needs someone her age to communicate with and perhaps bond with over this PIDD.
You can e mail me at dsclafanil@aol.com.
Everyone have a blessed weekend.
I am from the"WHO DAT NATION". Yes, I am a Saints fan and go to the games with my Mother...
Thank you everyone.
Deborah

Shauna-Lea Casteel
6:43 PM on Friday, September 07, 2012

Hi my name is Shauna-Lea, I'm new to this forum.  I was diagnosed with GBS last year and then CIDP. They "think" that's what I have, although all these mysterious aches and pains keep appearing. Does anyone else with CIDP experience random, painful twitching & tingling all over their body? Anyway, I have received 3 rounds of IVIG (3 days/3 doses) but only this last time did I have a reaction.  Unfortunately my doctors did not prepare me for the excruciating "full body migraine". Wish I would have known about this site sooner.  Thank you all for you information and words of encouragement! God Bless!!

I.G.Living
8:40 AM on Thursday, September 13, 2012

Hi Shauna-Lea.

Welcome to our community and blog. I’m so glad you found us! I am  sorry to hear you suffered a “full body migraine”. If the IVIG seems to be helping, you could try a brand switch… or extra premeds. Making sure to hydrate really well before, during and after infusing has helped many other patients mitigate the side effects. You can talk to your doctor and work in partnership to develop a plan possibly involving extra premeds so this doesn’t continue to happen when you infuse. Perhaps you could also discuss other possible treatments if IVIG is not helpful. If you’d like to chat further, please contact me directly.

Warm Regards,
Annaben Kazemi
I.G. Living Patient Advocate

I.G.Living
9:00 AM on Thursday, September 13, 2012

Hi Shauna-Lea.

Welcome to our community and blog. I’m so glad you found us! I am so sorry to hear you suffered a “full body migraine”. If the IVIG seems to be helping, you could try a brand switch… or extra premeds. Making sure to hydrate really well before, during and after infusing has helped many other patients mitigate the side effects. You can talk to your doctor and work in partnership to develop a plan possibly involving extra premeds so this doesn’t continue to happen when you infuse. Perhaps you could also discuss other possible treatments if IVIG is not helpful. If you’d like to chat further, please contact me directly.

Warm Regards,
Annaben Kazemi
I.G. Living Patient Advocate

DEBORAH SCLAFANI-TOSKI
6:27 AM on Wednesday, October 17, 2012

Hi, Be thankful that you were diagnoised when you were. You are blessed and now have all of these other people here for you. My daughter was diagnoised with her disease when she was in the 10th grade. It ruined her high school years and people thought she was expelled because of her always missing school. Be bless for NOW and we are all with you thru this process.
God Bless you.
Deborah Rose

Amie
12:36 PM on Monday, October 22, 2012

My husband was diagnosed with CIDP in Feb 2011.  He has been getting weekly IVIG since April 2012. Before that, he received bi weekly solumedrol infusions.
  Recently his doctor "upped" the dose so he only has to go every other week for an infusion.  We have noticed since the dose increased to 1 g/kg every other week it has been more difficult to get an IV started.  He is being stuck 4-5 times.  This was never an issue in the past when he was getting a lower dose, even going every week. He is also bruising more and has developed phlebitis in his forearm after his infusion last week.
For those receiving IVIG once a month, do you get IV's each time or do you have a port?  His infusion nurse said he needs a port but when he asked his doctor he was told to "drink more water".  

Mavis
1:21 PM on Monday, October 22, 2012

Amie - my two year old granddaughter was diagnosed April 2012 with CIDP and was getting IVIG every three then went to every two weeks. My daughter decided to get a port put in due to the small size of my granddaughter's viens and the difficult time the nurse had every time she had to have the infusion. Ports have came a long way since several years ago and my daughter is please with her decision. Good luck with what ever decision you decide.

Susan
11:00 PM on Monday, October 22, 2012

My two adult daughters and I have CVID and get IVIG every month.  We all had ports installed because we have difficult veins.  We have been getting treatment for about 3 years and never regretted the ports.  Also, drinking a lot of water helps even when you have a port.  We have what they call a "smart-port" and have been able to use them at other times, like when we were hospitalized for an illness, as well.  

Linda Thornrose
7:22 AM on Friday, October 26, 2012

Hi Susan,
Good for you on getting the ports.  Boy, you have your hands full with both you and your daughters having CVID.  Thank God for IVIG, right?  I, too, got a port after two months of trying to access my pitiful veins.  I had years of hospitalizations due to severe migraines that caused my veins to wear out.  I love the port.  Until recently, I was also able to get blood draws there.  However, insurance changed that, unless I am scheduled for IVIG on the same day.
I, too drink lots of water, actually all the time.  I also find if I used benadryl (or whatever antihistimine you prefer) more often than just the premed, that it helps a lot.
Dependent on what your insurance covers, you may consider asking for homecare for your infusions, especially since all of you have them.  I have had homecare IVIG for 8 years under my Blue Cross.  I have to start going to my doctor's office for treatments starting in December when my husband will be retired and I will have Medicare, who does not cover them in the home unless I am home bound.  Thank God I am not.  My infusions last 8 hours due to side effects and with an hour drive each way, I am really not looking forward to it.
God bless all of you and may you stay safe and healthy.

Dana
11:34 AM on Saturday, November 10, 2012

I live in the Dallas area and have been treated successfully with ivIG for Myasthenia Gravis for 7 years. It has made all the difference in the world in my strength. Because of ivIG I can work and be a contributing member of society!  I too am concerned about the availability of ivIG with socialized medicine -I'm still a decade away from eligibility for Medicare. Donna if you are still reading this column let me know here and maybe we can get in touch! Does anyone know of a way to stay in touch with Congress regarding legislation for ivIG? We should all make every effort to communicate to Congress as well as opportunities to educate the public of the value of ivIG and the importance of keeping it accessible to those who find it effective, regardless of "government approval".

michael
1:29 PM on Monday, November 12, 2012

To Linda:

When I switched from a commercial insurance plan to Medicare I had to begin going to an infusion center for IVIG vs. home.  While it is an inconvenience at first, it is now a trip we look forward to every week.  The nurses all know us and treat us like family.

To Dana:

Write to your local representatives in Congress and the Senate and let them know of your concerns.  There is very little chance that Medicare will not allow IVIG for MG patients since it is an approved treatment.

Ewelsh
5:24 PM on Sunday, December 16, 2012

I live outside Cleveland and my daughter started her IVIG this year in march. Our doctor is on the west side and we have the infusions done in her office too.

Gail
10:28 AM on Tuesday, December 18, 2012

I have CVID and get IVIG once a month at my doctor's infusion center in Cleveland, OH. If any of you want to meet others with your immune deficiencies, please check out the Immune Deficiency Foundation:
primaryimmune.org. You can get in touch with others, get lots of information, and possibly attend a group meeting in your city. One was held in Cleveland in November with a huge turnout.

jodi kaufman
3:04 AM on Tuesday, December 25, 2012

Has anyone givien ivig for there hi functioning autistic or adhd child?  I heard this helps and was recomended to a Dr in Chicago.  We live in NY and are planning to travel there for an ivig treatment.  

I lost my IVIG coverage
10:33 AM on Thursday, January 03, 2013

I lost my coverage for this drug because of the 20% I have to pay out of pocket. The insurance seem to do this because they know the average person cannot afford it. So I will be retuning to weakness and fatigue.

Terry Ford
7:00 AM on Wednesday, January 30, 2013

Hi, after years I have finally been diagnosed with stiff persons sysndrome.  Living in Salt Lake City andam about to undergo my third IvIg.  Question for anyone is after first treatment felt good for almost a month.  Second treatment had great energy for @ 10 days then felt a crash.  Pain is much less but stifness is about the same.  Going for third treatment in two days.  Hoping for longer duration of effects this time but not sure what to expect.  So does this seems normal?  Do others get longer term relief?

MRP0722
12:04 PM on Monday, February 25, 2013

My father in law has recently been diagnosed with CIDP.  Does anyone know of a specialist in the New Orleans / Baton Rouge Area?

Deborah Sclafani Toski
4:01 PM on Monday, February 25, 2013

Dr Carolyn Dahl...she is off of Houma Ave in Metaire, La. close to  East Jefferson Hospital. 504 885 2121...that was my daughters Dr before she moved to Houston Texas but she is back now and hopefully will go see her soon for a visit. She is very difficult to get an appointment asap so expect a long from now date. She is worth it..
Tell her Laurin Toski's Mom Deborah Sclafani=Toski referred and Sister Kathy Dunn...Good luck please let me know if you do use her.
She always makes you feel welcomed and really cares about you not like other dr's. God Bless you.

Phillip Cardish
7:28 AM on Tuesday, March 05, 2013

Dr. Peter Novak of the University of Massachusets-Worcester is trying
to obtain funding through  the N.I.H. for a phase iii clinical trial
after sucessfully documenting a phase i & ii trial for Multiple System Atrophy.He is out of the office until April 4th 2013.

Phillip Cardish
phillip6006@gmail.com
215-628-6366

MRP0722
1:21 PM on Wednesday, March 06, 2013

THANKS DEBORAH !

I WILL KEEP YOU POSTED.

BEST,

MRP

Mauri
3:45 AM on Thursday, May 23, 2013

I have autoimmune autonomic neuropathy. My failure is severe. Anyone aware of the prognosis at this stage. No one can/will tell me. I just started receiving ivig 3 months ago. Anyone in saint Louis area with this that wants to meet? I e heard only 1-3/ 1mm ppl with this...

Please let me know... I would love to talk. I get 130g, 2 days back to back each month of gammagard. Privigen was switched bc of headaches (which continue...)

Thanks!

Cara Lee
7:30 PM on Friday, May 31, 2013

I'm 20 years old and have been gettin IVIG for 2 years now in treatment for CVID, however it has helped with various other medical conditions that I have.  However in spite of how helpful IVIG has been for me, my reactions after the treatments are sever and I am not able to do almost anything for several days. I get severe migraines and then I will get nauseated and sometimes Iit turns into a vicious cycle and I end up in the hospital. I talke Advil and Benedryl after and during the treatments but I have found nothing helpful for the pounding migraines I get afterwards. Has anyone had any luck with anything?

Lynda
1:40 AM on Sunday, June 02, 2013

Hello to everyone.
I just learned of my deficient immune system in March, 2013 but learned the severity of it on May 3rd. I am a 51 year old female with a history of chronic sinusitis, allergies, asthma, bronchitis and GI problems. This has been going on for the last 25 years! I praise God for sending me my new doctor who on my first visit ordered labs that showed indication of IgA deficiency. He tested further and we now know my IgG serum and IgG subclass 1 and 2 are also deficient. I am now waiting to get the results of my T and B cells.

The irony of it all is that I have worked in the medical field for the last 25 years. I have been at my current job for seventeen years and I am subjected to viruses and infections every day as I work directly with the patients. Gee, I wonder why I was sick ALL the time! I am so frustrated with the doctors I have seen over the past 25 years for not being able to diagnose me correctly.

So, I am now awaiting approval for IVIG and I am in the process of retiring from my job. I know my job has been the reason I was sick all the time from the exposure to just about everything. This has been such an emotional ride; being diagnosed, accepting it, the thought of having IVIG for the rest of my life and the anxiety whenever I don't feel well which is often. For the last 6 months or so I really had to force myself to get up and go to work everyday. I was wondering if I was just getting lazy. Then in February I had another bad asthma flare up. The problem is that I don't respond to the routine meds anymore and seem to only respond to high dose steroids. So I sought out my new doctor who specializes in pulmonary as well as immunology. I am grateful to him for his rapid assessment and feel better as far as the asthma since being under his care. I take theophylline daily to breathe and I take a prophylactic antibiotic.

That is my story. I still have problems (emotionally) when I take in this big picture that has so drastically altered my life. I am also nervous about the IVIG treatment but also anxious because I want to feel better. I just hope it works. I have read that the sooner you are diagnosed, the better, as far as a positive response from the IVIG. I am tired of feeling this overwhelming fatigue.

It feels good to be able to tell my story to people who can relate to what I am feeling. Indeed, I do not feel alone.

Thank you all!

Bonnie
10:30 AM on Sunday, June 09, 2013

Bruce from Australia, I am wondering if you still read these posts.  I have IBM and asked my Neuro to consider IVIG.  His answer, doesn't work and too expensive.  I am wondering if it is covered in Canada.  Would like to hear how you are doing.  I was diagnosed in 2009, had pneumonia in October and really have progressed with muscle loss.

Bonnie

Chris
7:57 PM on Saturday, June 22, 2013

I am living in nebraska and have recently been diagnosed with CVID.  I have already been rotating antibiotics for 2 years without success so my doctor wants me to do IVIG but my insurance company claims that it is medically unecessary.  I have already gone through peer to peer reviews and an external review.  Anyone else out there that had the some trouble?

jimmy palmieri
2:32 PM on Sunday, June 23, 2013

I have been on IVIG for more than 30 years.  I currently get 450 cc's every four weeks.  I am feeling sicker and sicker every time i get a dose.  I get shakes, feel week, feel nauseous, and just flu-ish.  I premed with prednisone benadryl and hydration before and after.  I think my body is worn out from it.  I have behcettes syndrome, which is multi faceted and rare.  I am wanting to start going 5, 6 or 7 or more weeks.  Has anyone had that experience?  I just can't take the stress of knowing every 4 weeks I will be so sick again.

Erika
12:56 PM on Wednesday, August 21, 2013

I am 33 years old and was diagnosed with CIDP 4 years ago and receive monthly treatments of IVIG .
I receive 40 grams/ day for 3 days in a row every 4 weeks. I do mine at home with a home health nurse who accesses my port the first day and leaves it for the remainder of my infusions. I live in Salt Lake City, Utah and would love to get in touch with other people in SLC who also receive IVIG for CIDP.

Terri
9:30 AM on Friday, September 06, 2013

To Erika, I do not live in SLC but I am getting my 4th treatment in the loading period of 5 infusions.  I do hope this helps with CIDP.  How are you doing with the infusions

Penn96
2:50 PM on Monday, September 23, 2013

Hello! My Husband has been diagnosed with Dermatomyositis. I have not seen too many message boards with people with his condition listed on it!! It is considered a nuro-muscular disease with an autoimmune background?? The normal treatment course for the diease is of course steriods but with 2 months of taking 40mg a day.. his CK are still in the 2000's. Granted he started off in the 7000 range. He should be responding better by now. With his swallowing and breathing being effected, we were pleased to hear that his insurance has approved him for 4 500mg bags of Gammagard. For 4 straight days. He has never been sick a day in his life before this "hit him like a truck", as his DR. Says.I am nervous for him and how he will respond to the treatment. Just reaching out to see if anyone else has gone through this before and seeing what he has in store for him after 4 days of IVIG... feeling nervous?? Thanks and to all who suffer with their own body, prayers for all of you that you find the treatment that works for you!!

JoLynn
4:49 PM on Wednesday, February 05, 2014


I moved to the Texas Hill Country Area three years ago because Texas is a more pleasant place to work and do business. We have a world wide Ministry about 55 years old- so we moved and moved all our wonderful employees with us- I have worked hard but have been ill for about 12 years or so-

  I have been to almost every Dr in the greater LA area and treated for everything- probably as most of your have-I just found out I need IVIG treatments for PI.  I have been looking for a clinic closer to me since I am having a hard time getting around. If anyone knows of a good Dr or a clinic nearby I would appreciate your input. I am happy about finally getting a diagnosis   unfortunately that Dr is in CA. So Please if Help.. So many are depending on me.. Thank you- Blessings

Penn96
9:54 AM on Thursday, February 06, 2014

HI JoLynn!

We live in Round Rock which is on the other side of you and we see Dr. Chadha at the Austin Regional Clinic at Farwest. SHe has been so wonderful with my husband who has DM and has really saved his life. SHe has a great reputaion in the Austin Area for being one of the best Rheumatologist in the area. Dr. Chadha has gone above and beyond to get me husbands IVIG treatments approved from our insurance. Good luck to you and welcome to Texas!!

JoLynn
3:52 PM on Sunday, February 09, 2014


Thank You my fellow Texan- I appreciate  your response so much. I am sorry to hear your husband is ill, but thankful His Dr is such a good one!! That is very hopeful.

I will look her up and hopefully she is taking new patients.
Thanks Again-
JoLynn

Annette L
9:21 AM on Sunday, February 23, 2014

Hi everyone.  I am 52 years old and have been sick my whole life starting at 6 days old with severe breathing problems.  I always had severe asthma and allergies and spent at least a month at home in bed during the school year. I was finally diagnosed by a wonderful Dr. In Huntsville AL about three years ago.  I was also diagnosed at the time as factor Xiii deficient after also a lifelong tendency to bruising and bleeding heavily. Three years ago I almost lost my life due to a bad case of osteomyelitis which seemed to come from either a dental infection or a sinus infection. We will never know which started first. My doctors were completely puzzled as to why I what appeared to be an ear  infection progressed to bacterial meningitis which came close to kill me.  I even had a PICC line for 11 months and the most powerful antibiotics on the market.  I had MRSA, klebsiella, actinomycetes  and other strange bacteria infecting my left maxillary sinus and jaw bones. Many surgeries were required on order to combat the raging infection. IVIG has saved my life. My hematologist has been absolutely wonderful. I am now unfortunately on disability since the severe infections and bleeding disorder caused me to lose my employment.  I am VERY fortunate that I was able to get disability benefits and Medicare. I want to thank all of you for taking the time to write your experiences and lend your support and give the encouragement we all need.

ConnieK
1:35 PM on Wednesday, March 19, 2014

I'm from Vancouver, BC - actually a suburb of Vancouver. I get my IVIG at an outpatient ward of a local hospital. This particular ward does IV infusions only: IVIG, blood transfusions, iron, magnesium, and various antibiotics. I have met several individuals with PIDD who, like me, get IVIG on a regular basis. I've also met people with ITP and progressive multiple sclerosis who get IVIG. The BC provincial government Ministry of Health authorizes who gets IVIG, so there are only specific conditions which receive this precious serum. It is going to take time before any other conditions will be approved for IVIG treatment - likely after the FDA makes its own decisions about IVIG administration.

Mark Grabowski
12:35 PM on Friday, March 21, 2014

My Neurologist wants me start the IVIG treatments. I have been going to a Chiropractor for laser treatments. They seem to help for a few hours. Than I'm back where I started. My insurance covers the IVIG treatment. However,if it's done in a Drs. office it is treated as an office visit. Treatment through a hospital or clinic is a $2000 deductible! Does any one know of a Drs. office in the New England are that does the IVIG treatments in the office!?  Thank you ! Good Luck to all!! Mark G.

Kirsty
3:43 AM on Tuesday, May 13, 2014

Hi All,
I live in Australia. I have autoimmune Antiphospholipid syndrome. It effects me with obstetric failure but due to strict criteria here IVIG is very hard to get approval before pregnancy when you need it to reduce your antibody levels to even become pregnant and ivig only funded when pregnancy achieved which is difficult if you need ivig to allow pregnancy.
I've heard that sometimes ivig that isn't funded can be paid through an Australian health fund.
Is there anyone out there that can assist me locate which fund?
We've spent a lot on fertility treatments and can't keep failing at my advancing age also.
Apparent studies do state that ivig is superior in my condition for a live birth percentage becoming high instead no treatment at all. Conventional treatment hasn't worked and I have a loss that proves my condition caused it. Additionally I have a inherited blood clotting known as factor IV lieden.
Look forward hear from anyone that thinks maybe able help.

Denise Brown
3:20 PM on Monday, June 02, 2014

Has anyone with cvid had to quit working due to joint pain and weakness from infusions and cvid itself, and if so, was there much difficulty getting approved with cvid for social security disability. Need help, too exhausted to keep this up til retirement, am about to be 60 years old next month.

Abbie Cornett
1:54 PM on Monday, June 30, 2014

Hello Mark,I would suggest you get a re-verification of your benefits just to make sure you have been quoted correctly.  The MD office will bill for the IG, so he may be surprised with a big bill.  We can do a benefits determination for home/MD office/Outpatient hospital if would like. to do this we would need more information.  please feel free to contact me if you have further questions.

Abbie Cornett
2:08 PM on Monday, June 30, 2014

Hello Denise, thank you for your question. I would first speak with your immunologist about getting a referral to a rheumatologist.  Patients with CVID can develop autoimmune issues such as rheumatoid arthritis. If you are thinking about applying for social security be sure to speak with all of your doctors first, they need to know you are considering this. If you need further assistance please contact me.  

yun
9:09 AM on Tuesday, July 15, 2014

Hi, is there any oral IG supplement? i heard it is sometimes as efficient as or even better than IVIG.

Abbie Cornett
2:45 PM on Tuesday, July 15, 2014

Hello Yun, thank you for your question.  This is what I was able to find.The AAAAI work group included a comment about the use of orally administered IG in their work group report (not sure of the publication date since it isn’t in the document, but it is fairly old given the list of available products).  See page 12, “Orally administered IG can reduce the duration of diarrhea, viral shedding and hospitalization in children with acute rotaviral gastroenteritis”.

I also found a recent article (2013) where a patient with CVID who had lifelong chronic diarrhea and failure to thrive .  She was given monthly doses of low dose (5gm) orally administered IG and had improvement in diarrhea and gained 4kg over the 9 month time frame.  

If you have any further questions please contact me.

Abbie Cornett
Patient Advocate
IgLiving

Priscilla
9:30 PM on Monday, August 04, 2014

My son is undiagnosed with a neuromuscular disease (damages axon nerves). He's on life support and can't move his arms and legs--until he got one dose of ivig. He's started moving his fingers and arms and he's started initiating breathes. Insurance won't pay for any more treatments. Is it cheaper to pay for ivig in canada? I'm looking at $10,000 every 2 months for 2 years here in the US.

Robert Concienne
1:43 PM on Tuesday, August 05, 2014

I am 56 a year old male.  I have recently been diagnosed with Regional CIDP.  My symptoms started approximately 12 weeks ago.  I began having numbness, weakness & pain in the left brachial plexus region, which caused my Left arm hands and fingers to start having problems.  I had lab work, MRI, Nerve Conduction Study, & spinal tap to confirm the diagnosis.  I started IVIG treatments last Monday.  I was infused for 5 days straight for four hours at a time.  I will be getting additional infusions every 14 days for two days.  This will last for about six months.  Although I have only had five treatments of IVIG, my symptoms seem worse.  I am now starting to feel the same sensations in my legs, especially the left side.  Since I do not have any experience with this disease, I am hoping the the IVIG will put me into remission.  My Neurologist is great, especially since he diagnosed me so quickly.  I am thinking that it wouldn't be a bad idea to get a second opinion.  I live in Palm Springs, CA.  I am writing to see if anyone knows of a CIDP Specialist within my area of the country.  Also, it would be great to know if there are any support groups.    Thank you for any responses that may be helpful.

jonecap
6:08 PM on Sunday, August 10, 2014

Hi Robert,

My husband was diagnosed with CIDP 3 years ago and this website has been very helpful:    www.gbs-cidp.org
If you go under the CIDP link and scroll down to "health professionals", it will then give you a link to "centers of excellence".  My husband and I visited one of these (Johns Hopkins is closest to us) for a second opinion.  There is also information for local chapters that meet.  Hope this information is helpful to you.

robert concienne
4:36 PM on Sunday, August 17, 2014

Thank you jonecap.  The website you mentioned has been very helpful.  Robert

Rachel
1:30 AM on Wednesday, August 27, 2014

I was diagnosed in 2009 with a Selective IGM Deficiency and my Immunologist has been checking my Immunoglubulin Levels and Antibodies ever since, In Dec. 2013 not only was I IGM Def, but I was now IGG Def. as well. So he told me to start taking the OTC supplement Cordyceps. I have been taking 750MG since Jan. In May I had my levels checked again & my IGG has increased to 753. However when I had my Pneumonia Antibodies checked there was no protection, so I had my 3rd Pneum Vaccine since Jan 2010 this past June 2014, Had my follow-up lab 7/18/14 & there is not enough protection.

Went to Dr. 2 weeks and she said it is time for you know to start Ig Therapy, she recommended IVIG. I am 51 and have been on Medicare since Feb 2013 due to other health issues which is why I stopped working April 2007. After talking to my case Manger with BioRX she said because I am no longer IGG Deficient my Dr. can no longer diagnose me with PIDD and I will not be approved for IVIG in A Hospital which is paid thru Medicare Part B I opted to take Medicare Advantage Plan last yr and I am still with the same one.

She said based on my medical records she did not know why the Dr. did not diagnose me with CVID? She then said because of the Dr's I9 Coding & DX I should qualify for SCIG at Home and that this falls under Medicare Part D. I talked to he Mail Order Division of my insurance & she said this is Tier % Drug & I am responsible for 33%. I am clueless about costs, I saw somewhere that co-pays can run $3,000 - 10,000 but always more if you get it done in a hospital then at home. I don't have that kind of money as I am living on SSDI.

I have no idea what 33% is, and I wonder if that includes supplies, (tubing, gauges, needles, pump, numbing cream, gauze,tape,band aids, antiseptic med wipes, alcohol, etc. She said they will send out a Nurse to train me for the 1st 3x and then I am on my own. I have some anxiety about doing this weekly. Does this now mean I am stuck with this for life? I am worried I will get worse and that my QoL will diminish?  Does anyone die form this treatment? Is there some statistic about effectiveness in people who get this done.

I am IL about an hour from Chicago, does anyone know of any support groups in the suburbs, I would even be willing to go to ROckford for a support group.

Robert Concienne
10:02 AM on Wednesday, August 27, 2014

Hi Rachel.  I am getting IVIG "Gamgard" and I also have a medicare advantage.  I am also on SSDI too.  I cannot pay the 33% co-either.  The pharmacy I am using, somehow made it work so I do not have to pay the co-pay and get all the treatment that I need.  This link below may be helpful too.  My best wishes to you.


www.immunedisease.com/.../...s-paying-for-ivig.pdf

ConnieK
10:27 AM on Wednesday, August 27, 2014

Get in touch with the company which makes the IVIG. They can help people with some of the cost of IVIG.
www.gammagard.com/.../

Also, get in touch with the Immune Deficiency Foundation. They have people on staff who help with this sort of thing.
primaryimmune.org/.../

Hope this helps a bit.

Sharon H.
4:22 AM on Sunday, October 19, 2014

I live in Huntsville, AL and have recently been diagnosed with ITP. I am wondering about nutritional advice for people with ITP.  

Abbie Cornett Patient Advocate
2:53 PM on Sunday, October 19, 2014

Hello Sharon, I have attached a link to an article that should answer most of your questions.  If you need any further help please feel free to contact me

www.pdsa.org/.../diet-a-lifestyle-info.html



Abbie Cornett
Patient Advocate Ig Living

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