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.

cmael | @cmael | May 20, 2020

I was at Mayo Rochester last week for my two year checkup. Labs and other tests were good, buts my labs showed some signs of the BK virus. I’ll have it retested next week. She said if it comes back with signs of the virus again, she’ll lower my Cellcept dose. Has anyone else experienced this?

guidant07 | @guidant07 | May 20, 2020

From the beginning in 1981 I have been on 125mg imuran and 5mg of Prednisone for my kidney transplant. Only side affects that I am noticing is on my skin according to my dermatologist.

stephanierp | @stephanierp | May 18, 2020

In reply to @rosemarya "@stephanierp, It is awesome to hear that you are doing well! I'm curious, Have you been..." + (show)

Hello Rosemary!
I have been having my transplant meetings via video chats. This has worked wonderfully well, as it saves my husband and I ,6 hours of travel and an overnight hotel stay, each month. I really like it! I sign in a few minutes before the meeting time and have my questions or concerns written out ahead of time. I actually had never met my doctor before the video meetings and feel that it works well, because I can see his face and he can see mine.

Thank your for your advice concerning taking meds at the same time each day.

Have a great day!

azdan99 | @azdan99 | May 18, 2020

In reply to @tjgisewhite "@azdan99 first congratulations on your 17yr. heart. Second, what are you still taking the Cellcept for?" + (show)

That is part of the protocol of the transplant center.

azdan99 | @azdan99 | May 18, 2020

In reply to @danab "@azdan99 Hi and welcome to Connect, That is awesome 17 years post thanks for sharing and..." + (show)

I had my transplant at UMC in Tucson. In 2003, it was the only transplant center in AZ. Dr. Jack Copeland was the chief of the CT group. He developed a very successful program.

michaelswaim | @michaelswaim | May 16, 2020

I am lucky i guess. I've never had any side effects. For me they raise or lower my tacrolimus intake occasionally.

ladydidehart | @ladydidehart | May 16, 2020

In reply to @contentandwell "@ladydidehart Hi, and Welcome to Connect. Congratulations on your transplant, you look fabulous for being 3..." + (show)

Thank you so much. My transplant pharmacist did suggest that it might help and my nurse coordinator sent me the message so I’m sure they’re fine with me taking it. It’s nice to hear from others who have actually been through it.

JK | @contentandwell | May 16, 2020

In reply to @ladydidehart "Good morning! I’m 3 months post kidney transplant and doing very well!! Amen to that. My..." + (show)

@ladydidehart Hi, and Welcome to Connect. Congratulations on your transplant, you look fabulous for being 3 months post-transplant.

I had some hair loss also and biotin was recommended by my transplant team also, I think it must be fairly standard. Of course you should always check with your team before adding anything to your regimen. I do not recall the dosage that my transplant team recommended. The only caution about taking biotin is if you having a thyroid test, you should stop taking it a few days before. It does not cause any problems with the thyroid, just with the testing, and that depends on the type of test that the lab uses. Apparently there is more than one TSH test.
JK

ladydidehart | @ladydidehart | May 16, 2020

In reply to @rosemarya "@ladydidehart, After my liver and kidney transplant in 2009, I was taking cellcept, tacrolimus, and prednisone...." + (show)

My transplant team pharmacist did say that Biotin might help but didn’t recommend a dosage, only that it should be USP. I will be reaching out to my hairdresser as well. Yes, I’m returning for a 4 month visit in a few weeks. I just wanted the perspective of people who had actually gone through this themselves. Thank you!

Rosemary, Volunteer Mentor | @rosemarya | May 15, 2020

@ladydidehart, After my liver and kidney transplant in 2009, I was taking cellcept, tacrolimus, and prednisone. I experienced hair loss and nail problems.
At my first post transplant visit (5 months) I asked the dermatologist who was part of my roitine post transplant care team. He said I could take biotin and see if it helped. My liver and kidney teams were okay with me taking it.
The girl who cuts my hair said it was a result of the medications both before, during, and after transplant. She suggested some gentle shampoo and conditioner that her cancer patients liked to use.
Ask your transplant team what they think about it. Will you be returning to the transplant dept for a 4-5 month check-up?