1. < Transplants

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?

Interested in more discussions like this? Go to the Transplants Support Group.

davecummings | @davecummings | Mar 23 2:27pm
In reply to @pgruetz "It’s been 2 years since my liver transplant during the ordeal I lost a lot of..." + (show)
@pgruetz

It’s been 2 years since my liver transplant during the ordeal I lost a lot of my hair but now use Biotin pills and shampoo and it’s back for being 65 I just am on tacrolimus and prograf and high strength magnesium, Keppra not too bad I get headaches because I had a stroke and brain bleed right after my 13 hour surgery

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It’s been 1yr and almost 2
months since my transplant. I also had a right sided stroke and my pituitary gland disappeared post transplant. The meds are crazy still!! Anti rejection, anti seizure, anti high blood sugar, and so one and so one. From stage 4 diagnosis to transplant was 7yrs 5 months. Which was a battle in itself with 50 EGD’s and 9 paracentesis , and the crazy bilirubin encephalitis trips were too numerous to count. I thank my family for seeing me through this. The entire medical professional staff for their hands on care. But mostly I thank my Lord and Savior for blessing me once again with life!

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1 reply
pgruetz | @pgruetz | Mar 21 9:10am

It’s been 2 years since my liver transplant during the ordeal I lost a lot of my hair but now use Biotin pills and shampoo and it’s back for being 65 I just am on tacrolimus and prograf and high strength magnesium, Keppra not too bad I get headaches because I had a stroke and brain bleed right after my 13 hour surgery

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1 reply
bosco17 | @bosco17 | Mar 20 4:57pm

I"m a liver transplant patient 15 years out. 3 years ago my transplant doctors in NY said I could try no anti rejection meds and to this day I have not rejected and no longer have side effects of meds. Slowly weaned down. I am lucky because I was a good match." I don't recommend trying this without your Drs. approval" . The liver is the largest organ in the body and has the best chance of not rejecting after at least 10 yrs on immunosuppressive drugs!

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2 replies
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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1 reply
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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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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Karen B. | @bram7747 | Jan 16 4:09pm
In reply to @hello1234 "Hi @bram7747 😊 It is very nice to meet you! It sounds like your husband received..." + (show)
@hello1234

Hi @bram7747 😊
It is very nice to meet you! It sounds like your husband received a heart transplant and was taking Tacrolimis. Was he also taking Mycophenolate or another immune suppression med with the Tacrolimis? Is his main problem with Everolimus the thinning of his skin or is he experiencing other side effects? I am a kidney transplant patient on Tacrolimis and Mycophenolate and I am having lots of Mohs surgeries and freezing so we are now discussing a possible med change too.

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Yes to heart transplant & Tac. He was only on Mycophenolate a couple months. They stopped that 1 as his heart biopsies were +2 rejection. They upped his Tac instead. After a year or so docs lowered the Tac back to 3 mg from 4. He will be 12 years out in May & it’s been a nightmare. He had Rt. Mid cerebral artery stroke in recovery, so lots of on going issues with that. Sees Dermatologist 4-6 Wk intervals. Always has squamous carcinomas. Lots of Mohs & freezing. He was put on Rapamune with goal to quit Tac. It has a lower cancer profile. As he was building up, he was still on Tac, reducing weekly. Couldn’t get through it as the 2 drugs together even for a few weeks, caused dangerous bleeding episodes. Building new, while reducing old. I hope for u that if your doc decides to try a different drug there is a better way to transition. I wish you the very best with your Kidney & any Medicines that could reduce cancers. Keep me posted.

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benedict66066 | @benedict66066 | Jan 13 10:47pm
In reply to @rosemarya "@benedict66066, I had to look this up as it is unfamiliar to me. Here is information..." + (show)
@rosemarya

@benedict66066, I had to look this up as it is unfamiliar to me.
Here is information about eplet matching at Kidney For Life
- What is the Kidney for Life Initiative?
Kidney for Life is an initiative of the National Kidney Registry that utilizes eplet matching technology to improve donor-recipient matching for living donor kidney transplants.
https://www.kidneyforlife.org/about-kidney-for-life/
This patient section shows the participating Transplant Centers and contact information:
- Kidney for Life
https://www.kidneyforlife.org/for-patients/
Where will you receive the transplant? Did you find it on the list?

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Thanks so much! I have seen this material. I wondered if anyone had a transplant using a low eplet mismatch number.
I appreciate it.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 13 9:03pm
In reply to @benedict66066 "Hi Rosemary, I am about to receive a living donor transplant, possibly within 6 months. I..." + (show)
@benedict66066

Hi Rosemary,
I am about to receive a living donor transplant, possibly within 6 months. I am interested in eplet matching and how to reduce rejection drugs.

Jump to this post

@benedict66066, I had to look this up as it is unfamiliar to me.
Here is information about eplet matching at Kidney For Life
- What is the Kidney for Life Initiative?
Kidney for Life is an initiative of the National Kidney Registry that utilizes eplet matching technology to improve donor-recipient matching for living donor kidney transplants.
https://www.kidneyforlife.org/about-kidney-for-life/
This patient section shows the participating Transplant Centers and contact information:
- Kidney for Life
https://www.kidneyforlife.org/for-patients/
Where will you receive the transplant? Did you find it on the list?

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1 reply
benedict66066 | @benedict66066 | Jan 13 3:36pm

Hi Rosemary,
I am about to receive a living donor transplant, possibly within 6 months. I am interested in eplet matching and how to reduce rejection drugs.

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