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Transplant anti-rejection medications. What's your advice?
Transplants | Last Active: 5 days ago | Replies (362)Comment receiving replies
I am on week 3 post transplant. The Tacrolomus has been hard to deal with. My extremities felt like they were on fire, my feet hands and ears, I was itchy everywhere, I was shaky, my lips were numb and I was so sick to my stomach with diarrhea. They lowered my dose to 2 mega in am and 1 in pm. I still have the on the fire sensation in my feet, but the rest have subsided. I do have to eat something at least 30 minutes before taking my meds otherwise I am sick to my stomach. They just lowered my cellcept to 3 and 3 in am and pm respectively. My hair didn’t fall out and I was taken off prednisone on day 4 post transplant. Still waiting for the swelling to go down. I can see right where they placed the kidney. I hope it does t stay like that long term.
Replies to "I am on week 3 post transplant. The Tacrolomus has been hard to deal with. My..."
Hi Jane and Congratulations on your new Kidney. I am a Heart Transplant patient so I won't be able to know a lot about you particular organ but am quite familiar with the 3 Medications you mentioned. Right off the bat the shaking is Tacrolimus that will get better as they lower the dose but it sounds like your at a low level now.That's the only one I'm on anymore and at the beginning it gave me a problem but not anymore . I take 1.5 twice a day and I'm 4 years post but due to blood issues they took me off Cellcept.
The itching tho I don't remember an issue with that. As for the upset stomach and vomiting they did have to put me on another med to help with that it seemed every morning I had a problem and was concerned about loosing the meds I just took, so food was also a necessity. But overall it's mainly getting used to them and I am sure time will help with most of it. I think our bodies are just getting used to so many meds at once it's a bit of an adjustment. By 6 months or so I was pretty much back to normal except for me I caught a virus called CMV from my donor but that's not really a big deal of compromise for the benefits of the new organ. I hope things improve soon , let me know if I can help.
Blessings
Did your burning feet and other symptoms from tacro ever stop? I’m almost 4 years post transplant. Burning in my feet didn’t stop and has led to progressive peripheral neuropathy ( burning, numbness and pain). The neuropathy has now spread up my calves, to my thighs and hips. I have some numbness in my fingers, too. All my labs and kidney function are perfect but my life is miserable with this neuropathy! Im taking tacro 1.5 mg a day, cellcept 1000 mg a day, and prednisone 1 mg a day. Did they take you off tacro? What med did they put you on? I have been to neurologist and rheumatologist, neither have helped me. I am depressed.
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Hi Jane and welcome. Congratulations on your new transplanted organ. I'm sorry to hear that the side effects of Tacrolimus are making you not feel as well as you'd like to be. I'm tagging fellow members @rosemarya @gaylea1 @jerrynord @contentandwell @danab @estrada53 @webiondev @cmael and others into this discussion to offer their tips and experiences.
While we wait for others to join in, you may also be interested in this related discussion:
- Cellcept and Tacrolimus Co-administration https://connect.mayoclinic.org/discussion/cellcept-and-tacrolimus-co-administration/
Jane, have you talked to your transplant team about the side effects you're experiencing?