← Return to Transplant anti-rejection medications. What's your advice?

Discussion

Transplant anti-rejection medications. What's your advice?

Transplants | Last Active: 21 hours ago | Replies (371)
Comment receiving replies
@jolinda

This is why I love this group, you all validate things I thought were my own quirks! We can gripe to our doctors and nurses but they just read about side effects where we all live side effects. I don't get up so much at night as I did when I was first transplanted but I notice how frequently I need to "go" after taking my evening meds. My husband and I typically watch TV in the evenings and I have him pause our shows every 40 mins to use the bathroom after taking my meds. I always thought it was just me but I guess not. I also find myself much more thirsty after taking meds and I wouldn't ever want to restrict my liquids.

Jump to this post

Replies to "This is why I love this group, you all validate things I thought were my own..."
Dana, Volunteer Mentor | @danab | Apr 25, 2020

I feel the same, it's a great relief to know we are not alone on some things

VIEW AND REPLY
sassytx63 | @sassytx63 | Jan 30 11:30pm

I just found this "Connect" site tonight, and I have been learning so much, lol. I never thought to connect the getting-up-during-sleep to my Tacrolimus. I mean, I've had kids,and thought it was just part of aging. 🙄
I had a liver transplant 8 years and 2 months ago. I was able to dutch the Phoslo and Cellcept the first year. About 6 months post-transplant, I developed a microcellular ductopenic rejection, and received 5 doses of Thymol. I'm here to tell you the "'roid rage" is real! Because I had so many doses of steroids to manage the rejection, I developed steroid-induced diabetes. I finally got taken off Prednisone last week in order to help my blood sugar numbers. But Tacrolimus also raises blood sugar. I was on 4mg Tacro daily and 2mg of Sirolimus daily for over 8 years. Last week my Tacro was lowered 1mg and I'm now taking 4mg of Sirolimus daily. I love getting the medical monograph papers when I get my prescriptions, and Sirolimus is black-boxed. It also said, "Do not take Sirolimus if you've had a liver transplant ". It made me laugh, because I trust my medical team.
Apparently, my immune system is so robust that they really have to stomp it into submission!
I've was so terrified of covid in the beginning. I took 2 shots and 1 booster, but I'm not taking any more shots. I actually had covid last October. Had a headache day 1, nausea/vomiting day 2, nasal congestion day 3, and I lost my senses of smell/taste on day 4 which only lasted 4 days. That's it, no coughing or shortness of breath at all. I realize that since I don't often work outside the home I'm not exposed to a lot of people. I'm so very grateful to be alive!
Question: has anyone had to take Lisinopril for high blood pressure, and then have to stop it because of an allergy? I've never been allergic, or sensitive, to anything in the past. Except, now Lisinopril. My PCP told me to stop taking it 2 months ago because it would occasionally cause face and tongue swelling. And the coughing I thought was due to dust (I live in a rural area) was also due to a Lisinopril sensitivity. Who knew?
I apologize for the rambling, but this is my first experience with a transplant support group. Thank you.

VIEW AND REPLY