Transplant Medications

[nholleger]

Hi all,
I was wondering of those who have had transplant if anyone has had ongoing issues with medication side effects?  Thank you!  Nadine

[Rerun]

 

    

[Deanne]

Prednisone and I do not get along. I'm 11 months post transplant and recently started having anxiety attacks. I was on prednisone in the past and also had anxiety attacks, then, too. I don't normally have anxiety issues, and they stopped last time when prednisone was discontinued, so I'm pretty sure prednisone is the cause again now. The goal is to take me off prednisone this year since I haven't had any rejection episodes, and in the meantime, do things like meditation, eliminate caffeine, exercise, etc. Prednisone also causes osteoporosis and I went into transplant with osteopenia, so it might have caused further damage to my bones by now.

Magnesium supplements cause diarrhea, but it's manageable through Immodium and I've been working on reducing the dose. My magnesium level is creeping up over time, dietary changes (I live on peanut butter), and I think floating / bathing in Epsom salt is helping.

[nholleger]

I feel like I have the flu all the time.  I have recently changed medications and am doing better but I still feel like I have the flu.

[Deanne]

Sometimes I feel like that in the evenings. I thought for weeks that I was coming down with something, but nothing ever came of it. I just went to bed and felt better in the morning. I hand't considered the meds might be causing it. Any idea which medication might be doing it?

[nholleger]

I thought it was Prograf but I am no longer taking that and I still feel tired, and ill (ish)

[MooseMom]

Nope, not really.  Sometimes I get the jitters, but that occurs mostly when I am tired or hungry.  Other than that, I feel terrific!

[SooMK]

I'm on Prograf and tacrolimus. I mostly feel fine.  I have a laundry list of side effects but aside from headaches that can be pretty bad none of them are more than annoying. I can't relate to feeling like I have the flu or sick. I hope that isn't going to continue for you.

[jeannea]

I call it side effect land. I have really bad hand tremors from Prograf. Some of the worst they see. High blood pressure. Osteoporosis. Depression. Nightmares. Intestinal issues. Neuropathy. Nausea. However, I am not normal. Everything about my health history is way off from the average.

The other week I had an appt at transplant clinic with a nephrologist who helped when I had PRES and a coma. I said you know my body is always weird with things. He said well, you're unique. I said I was dying to hear what they called me in meetings. He declined to answer. He's the best.

[nholleger]

I call it side effect land. I have really bad hand tremors from Prograf. Some of the worst they see. High blood pressure. Osteoporosis. Depression. Nightmares. Intestinal issues. Neuropathy. Nausea. However, I am not normal. Everything about my health history is way off from the average.

The other week I had an appt at transplant clinic with a nephrologist who helped when I had PRES and a coma. I said you know my body is always weird with things. He said well, you're unique. I said I was dying to hear what they called me in meetings. He declined to answer. He's the best.

I have all those side effects. My voice even trembles now. I am being switched to new meds. Hopefully that will fix the troubles. I am 18 months out from transplant and I still feel .........icky.