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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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stolson1 | @stolson1 | Jan 17 4:01am

I had a liver transplant almost 6 years ago I am on tacromilis 1mg every 12 hours. I will experience headaches every once in a while but not as much as before. Hair loss is probably my main side effect - I was lucky I had very thick hair at one time.

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lynngs44 | @lynngs44 | Jan 17 11:11pm

I am so grateful that I came across this site. I had a heart transplant and also a pancreas transplant (which I lost). I have suffered from joint pain, hair loss, and nocturia (something I never even knew happened because of anti-rejection meds). I have been on tacrolimus, mycophenolate, and prednisone for the past 7 years. Now they have added the sirolimus because I was recently diagnosed with CAV. Since they added the sirolimus, I am unable to sleep at night, shaking, and anxious. It is comforting to know that I am not alone. Thank you all so much for sharing and for your wonderful insight. Reading your posts has helped me tremendously.

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jackie421blfdgurl | @jackie421blfdgurl | Jan 24 5:37am
In reply to @contentandwell "@jolinda I was initially on tacrolimus but it caused my creatinine numbers to be high. Initially,..." + (show)
@contentandwell

@jolinda I was initially on tacrolimus but it caused my creatinine numbers to be high. Initially, they recommended that I drink 80 - 100 ounces of fluid a day and that helped, but not enough. They then changed me to sirolimus and since then I have been fine.
The only noticeable effect I had was thinning hair but the transplant team suggested that I take biotin so I do. I have continued to take it because it is also good for your fingernails and mine are very thin.
I was able to drop from 4mg a day of sirolimus to 2.5 when I chose to take it consistently without food. I set my alarm for 6:30, get up and take my medications, and try to go back to sleep for another hour but usually that does not happen so I just get up and do something until the hour has elapsed. Since I tend to be inconsistent when I eat my breakfast, and I am supposed to take the sirolimus at the same time daily, I find this works for me.
JK

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Hi. Jackie here. My liver transplant was 10/20/20
Went thru the mill with medication.i too dropped tacrolimus I am on sirolimus 3 mg a day, just in morning my level is good I had to watch my creatine levels
But as today now I have to worry about my GFR numbers for the kidneys
I need to see a kidney Dr my last number was 43.....anyone else??? What the f....now I have to do research. I am not diabetic and b/p is under control it is ok.when I came home from my surgery I was in hospital 2 months my hair also acted up but I started taking biotin and it helped. I don't look like Farrah Faycett but it is ok not bad ..well any info someone can add always appreciate. Kisses to all

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