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Posted on 14. February 2013

Pills, Pills and More Pills

By Kelli Mulloy

For our family, primary immunodeficiency disease (PIDD) has not been a single diagnosis in an otherwise normal life. We seem to have lots of variables and lots of doctors. Each new complaint results in what my daughter, Courtney, calls “another ologist.” She has a cardiologist, rheumatologist, neurologist, endocrinologist and the list goes on. Each new doctor seems to result in a new pill. And while the doctors all say they don’t like adding a pill, they do it anyway. I am careful to use the same pharmacy because I am terrified that she will have a bad interaction at some point. And I am certain that no drug company has tested its drug against the exact combination of what she is taking. So, how do they know?

In most cases, the pills have performed as expected and made her life better. So far, there have been no drug interactions or problems. However, a few months ago, my oldest daughter, Kaitlyn, started taking a new medication that Courtney was already on. I noted that Courtney had not had any side effects and that the drug had been very effective. Over the next three to five weeks, Kaitlyn had numerous annoying but not serious side effects. She ultimately found the medication to be very helpful.

I started to wonder: Did Courtney have those side effects too? Did she just assume that they were a part of her other various aches and pains and illnesses? Or, did she have some other medication that was masking the symptoms? When I asked her, she didn’t really have any recollection and told me I was overreacting.
But I worry. I know that medications have come a long way, and I know that each of my daughter’s doctors is doing their very best for my child. I just wonder. Thinking about each of her doctors, I realize I trust each of them, and I don’t really know what the alternative is.

One thing I do know is that it is important to have one doctor who is aware of and active in all of her care. Courtney’s immunologist is my first line of defense. I go through him for every referral and every complication. I use the doctors he recommends, and I don’t start something new unless he knows about it. I presume that he has seen this before and he knows what he is doing. I spend a lot of time on the Internet reading all I can, and I ask questions if I have them. He is always ready and available to answer all my questions, and I’m thankful for that.

If you have a child who is in this situation, and you don’t have a doctor acting as the coordinator for all of his or her care, I would highly recommend that you find someone you can trust. Then, be sure you pay attention, too. You are your child’s best advocate.

How do you manage multiple medications for yourself or your loved one?

This blog was reposted with permission from www.livewithpidd.com

Comments (4) -

Erin Cochran
6:09 AM on Friday, February 15, 2013

Before I take any new pill I use a drug interaction checker, where you can put in all your meds and it will tell you if there are any potential interactions - http://www.drugs.com/drug_interactions.html

Christine S.
2:02 PM on Friday, February 15, 2013

This is totally me! I have been dealing with my illness for 6 1/2 years now and it is very difficult at times.  Many medication and many "ologists" than I can count.  Just have to be your on advocate and do what you do.  One doctor that is on the ball with your whole disorder.

Sheri Dean
9:06 AM on Saturday, February 16, 2013

I also have alot of ologists, in the same University Medical Center so all of my records are available to them at every appointment.  I also fill all of my scrips at the same pharmacy, my pharmacist has a list of vitamins and supplements I take because they can also cause adverse interactions with meds.

Marsha
1:47 PM on Tuesday, February 26, 2013

Thanks for commenting about OTC drugs your taking.  I moved recently and had been w/same pharmacy for many years so had forgotten that small but significant detail.  I'm also  having hard time in big city finding pharmacy willing to give appropriate attention my complex health requires.  I'm single with almost no help and too sick to babysit pharmacy.  I'm on also on Medicare and need pharmacy I can get 90 day supply from w/out use of mail.  Any body else had this problem or have any suggestions?  I'm on my 7th pharmacy in a year!

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