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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@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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@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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@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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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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@rachel5239

I also had my transplant almost 38 years ago. I was number 90 and 98. Still doing really well. I think my mayo doctors are even a little shocked.

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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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@rachel5239

Yes I still go to Mayo. I live in southeastern Minnesota so I am about 75 miles away. I am lucky I am so close. I love all my doctors at Mayo.

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They had only been doing transplants for 2 years when I had mine. I had to have a 2nd transplant 10 weeks apart. My body absorbed my bile ducts. The 2nd one went really well.

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@rosemarya

@rachel5239 - I want to welcome you to Connect! Wow!!! 38 years...can you hear me cheering? I am going to celebrate 16 years next month with a liver and kidney and people like you are an inspiration for me.
I am in awe of you being number 90 and 98! I don't know what number I was, but it is surely much much higher than yours. I also got my transplant at Mayo in Rochester and I'll bet that it was much different when you were there.
Do you live near Mayo, or do you go back for any medical care? Does Mayo still follow your liver transplant health?

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Yes I still go to Mayo. I live in southeastern Minnesota so I am about 75 miles away. I am lucky I am so close. I love all my doctors at Mayo.

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@rachel5239

I had a bleed 2 years before my transplant. That is why I had to have the transplant when I did. I was 35 years old. When I was going through all this stuff my only prayer was that I could live long enough so my boys could graduate from high school. Now I have 4 great grandchildren. Life can surprise you.

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@rachel5239 - I want to welcome you to Connect! Wow!!! 38 years...can you hear me cheering? I am going to celebrate 16 years next month with a liver and kidney and people like you are an inspiration for me.
I am in awe of you being number 90 and 98! I don't know what number I was, but it is surely much much higher than yours. I also got my transplant at Mayo in Rochester and I'll bet that it was much different when you were there.
Do you live near Mayo, or do you go back for any medical care? Does Mayo still follow your liver transplant health?

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@jackie421blfdgurl

Kisses...kisses...to u. It shows what a strong person u r!!!congratulations for that. We all know the hospitals we r affiliated with saved our lives. But for sure never told us the bumpy road we will go down later. Accept the good with the bad .g I d bless us all. We r a group that has been thru a lot
And we r still standing....we r amazing.....

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I had a bleed 2 years before my transplant. That is why I had to have the transplant when I did. I was 35 years old. When I was going through all this stuff my only prayer was that I could live long enough so my boys could graduate from high school. Now I have 4 great grandchildren. Life can surprise you.

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@rachel5239

I still take .5 mg of Tacrolimus 2x a day. Also 5mg of prednisone and 500mg of cellcept 2x a day. I have never been able to go off of all my medications. Hoping for the best for you.

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Kisses...kisses...to u. It shows what a strong person u r!!!congratulations for that. We all know the hospitals we r affiliated with saved our lives. But for sure never told us the bumpy road we will go down later. Accept the good with the bad .g I d bless us all. We r a group that has been thru a lot
And we r still standing....we r amazing.....

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