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alaking (@alaking)

Belatacept

Transplants | Last Active: Apr 23, 2019 | Replies (25)

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@alaking

I get tested every two weeks. My levels are low only 3.5. but I am very sensitive to it. I have told my coordinator multiple times throughout the year. The longer im on it the worst it gets. I'm told from my coordinator it's not the meds but I looked it up all the other meds I'm on I've been on for 30 years (my first transplant was 30 years ago) so I know it's not them. I'm not sure if there is anything else they can switch me to. I'm desperate.

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Replies to "I get tested every two weeks. My levels are low only 3.5. but I am very..."

@alaking, I don't have answers, only more questions as I check in this morning.

How far away are you from your transplant center? Can you schedule an appointment to see your doctor? Are you due for your annual evaluation soon?

Have you talked to your pharmacist? I get my meds thru Mayo Specialty Pharmacy, and I am aware that other transplant centers also use their own specialty pharmacies. In my experience they are more knowledgable about our immunosuppressant medications than the neighborhood/chain retail pharmacies. Could this be an option for you?

If what your nurse coordinator say is true, that meds are not the cause of your misery, I hope that you can get that taken care of.

I really want you to feel well.