How long did it take you to adjust to the anti-rejection medications?

Posted by benedict66066 @benedict66066, 4 days ago

I am taking cyclosporine, myfortic, and prednisone. I'm in my 6th month post transplant. I have never felt worse, even before transplant with an ailing kidney. I would be interested in knowing how long it took your body to adjust to these new medications?

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So sorry you’re having a tough time. I was caregiver for my husband post transplant. He was miserable until around 9 months out. He will be a year out this Monday, the 27th. He had a horrible time taking the meds. He was bloated, fatigued, weak (no appetite) and very nauseous. They had to stop cellcept within the second week. He could hardly eat because he would get so nauseous from the meds and didn’t want to throw up and lose the anti-rejection meds. He ended up having to force high protein shakes several times a day. He lost about 100 lbs in the 9 months but was a little over 300 before the transplant. I’m not sure what changed at 9 months (didn’t give up prayer and faith maybe that was it), but it got scary around 6 months when he was still not improved from med side effects and ended up in the hospital for 4 days. He told me he didn’t picture life like this post transplant. They reintroduced cellcept because labs were showing he needed another anti rejection med. I told them they had to stop at Mayo because it made him so sick. I told them I had concerns he’d stop eating all together. This time though it had the opposite effect. His appetite started increasing but he’s able to maintain his weight loss not losing more weight though. He now has his energy and color back. He doesn’t look as weak and frail as he looked for months. I Thank God this turned around for him and pray it turns around for you too. Keep working with your transplant team on the meds.

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Profile picture for cocobean0520 @cocobean0520

So sorry you’re having a tough time. I was caregiver for my husband post transplant. He was miserable until around 9 months out. He will be a year out this Monday, the 27th. He had a horrible time taking the meds. He was bloated, fatigued, weak (no appetite) and very nauseous. They had to stop cellcept within the second week. He could hardly eat because he would get so nauseous from the meds and didn’t want to throw up and lose the anti-rejection meds. He ended up having to force high protein shakes several times a day. He lost about 100 lbs in the 9 months but was a little over 300 before the transplant. I’m not sure what changed at 9 months (didn’t give up prayer and faith maybe that was it), but it got scary around 6 months when he was still not improved from med side effects and ended up in the hospital for 4 days. He told me he didn’t picture life like this post transplant. They reintroduced cellcept because labs were showing he needed another anti rejection med. I told them they had to stop at Mayo because it made him so sick. I told them I had concerns he’d stop eating all together. This time though it had the opposite effect. His appetite started increasing but he’s able to maintain his weight loss not losing more weight though. He now has his energy and color back. He doesn’t look as weak and frail as he looked for months. I Thank God this turned around for him and pray it turns around for you too. Keep working with your transplant team on the meds.

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@cocobean0520 Thank you so much for this and I am so sorry about what your husband had to go through! And you as well. God speed, to you both.

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I am on tacromilis now for seven years. I had gout a few times (never had it previous to the liver transplant) I would say after the first year things improved I had a lot of headaches but they improved after the year mark, wishing you the best -

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Profile picture for stolson1 @stolson1

I am on tacromilis now for seven years. I had gout a few times (never had it previous to the liver transplant) I would say after the first year things improved I had a lot of headaches but they improved after the year mark, wishing you the best -

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@stolson1 Thanks for letting me know. After the one year mark, did Mayo reduce your tac and is that what made the headaches better? Or do you think it was time passing and your body adjusting that helped you?

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The last q was not addressed to me but 2 cents from the peanut gallery. After my liver transplant 2 years ago they started me on 4 MG a day (2 am and 2 pm) that's when the headaches were the worst. But it was gradually reduced to now 1 MG a day (.5 am .5 pm) and now no more headaches. They lessen with each reduction along the way and were pretty much gone by half way (2 mg per day). Best of luck.

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