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

Posted by jolinda @jolinda, Apr 23, 2020

Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?

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Hi All!!
My husband is on 1.5mg of Envarsus once a day. He is just about 18 months post liver transplant. That's all he takes. Blood work is still checked every other week. He's been doing awesome. The only issue he has is extreme fatigue. We have asked every Dr. and no one really has any answer. Everything from a side effect from the medication, which it is, to "hopefully, it will subside". He's lucky that's the one and only problem he has compared to others. Stay well, everyone!!!

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@lsheerin

Hi All!!
My husband is on 1.5mg of Envarsus once a day. He is just about 18 months post liver transplant. That's all he takes. Blood work is still checked every other week. He's been doing awesome. The only issue he has is extreme fatigue. We have asked every Dr. and no one really has any answer. Everything from a side effect from the medication, which it is, to "hopefully, it will subside". He's lucky that's the one and only problem he has compared to others. Stay well, everyone!!!

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Wonderful! I am just about 3 years post liver transplant - and still have fatigue, although it has much improved. I was incredibly ill for over 2 years prior to transplant - and lost a lot of weight, muscle & stamina. Since transplant, I have diligently tried to exercise every day - even just a long walk - and attribute a lot of my recovery to that habit. I got ill at 60, was transplanted at 62, and am now 65 - and I daresay feel pretty normal. Best of luck.

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@gerryp

Wonderful! I am just about 3 years post liver transplant - and still have fatigue, although it has much improved. I was incredibly ill for over 2 years prior to transplant - and lost a lot of weight, muscle & stamina. Since transplant, I have diligently tried to exercise every day - even just a long walk - and attribute a lot of my recovery to that habit. I got ill at 60, was transplanted at 62, and am now 65 - and I daresay feel pretty normal. Best of luck.

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Hi, @gerryp.

3 years post liver transplant...Congratulations!

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@rosemarya

I take cellcept and tacrolimus for my liver and kidney transplant. I used to take a low dosage of prednisone per researched evidence related to my situation for several years.
While most people complain about prednisone, I experienced a positive effect! I have an autoimmune condition, Vitiligo, that produces patches of nonpigmented skin and premature white hair. I noticed that within a couple years after my transplant that my skin was an almost even skintone with no white areas. That was a pleasant surprise! When I was tapered off prednisone a few years ago, the vitiligo began to show up on my skin again. .

Anybody have a similar experience?

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I have been taking prednisone since I was 16. Different doses but I have been on 5mg for years. At 5mg I gave no side effects. My liver disease was autoimmune chronic liver disease. I also tale .5mg of tacrolimus 2xa day. Also cellcept 500mg 2 x a day. I am 38 years out from my transplant and still pretty darn good. I am very thankful.

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@liver2007

Wow, that’s amazing! I’m 18 years from transplant. It has not been an easy journey. Along the way I was diagnosed with more medical issues. Every day is a new day and I push on the best I can. For all of US, here’s to Good Health ❤️

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My biggest problem now is skin cancers. It has always been squamous cell which is easy to get rid of if you go have it checked. I have lost count of how many Moh’s surgeries I have had. But if that is the only thing I need to worry about, I am ok with that. I have been on prednisone since I was 16. No one said I needed to stay out of the sun. We used to do a lot of boating and water skiing. I have been careful since my transplant but the damage was already done.

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@rachel5239

I have been taking prednisone since I was 16. Different doses but I have been on 5mg for years. At 5mg I gave no side effects. My liver disease was autoimmune chronic liver disease. I also tale .5mg of tacrolimus 2xa day. Also cellcept 500mg 2 x a day. I am 38 years out from my transplant and still pretty darn good. I am very thankful.

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I also went into rejection in 2009. That was when I had to go on a 3rd medication.

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