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

Posted by jolinda @jolinda, Thu, Apr 23 12:18pm

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?

@tjgisewhite

@ladydidehart that is an answer you would have to get from your transplant team. Everyone is different depending on what other health issues you have going on. I hope this helps.

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I did reach out to my transplant team and didn’t get the reassurance. They told me that since I wasn’t on tachrolimus they didn’t think it was related.

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@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?

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@rosemarya

@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?

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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!

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@ladydidehart

Good morning! I’m 3 months post kidney transplant and doing very well!! Amen to that. My question is about my extreme hair shedding. It’s not chunks of hair loss, but more constant shedding of strands of hair. I’m not on Tachrolimus (sp?). I’m on Mycophenolate and Belatacept. Anyone else experience the same thing? How long does it last? Does Biotin or anything else help?

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@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

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@contentandwell

@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

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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.

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

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@danab

@azdan99 Hi and welcome to Connect, That is awesome 17 years post thanks for sharing and such a low dose that's great.

I'm a Heart transplant also and now on my third year post. I too live in Arizona and got my Heart at Mayo Phoenix. I always appreciate hearing about others journeys and it sounds like you have had a successful journey since transplant.
Have a Blessed Day
Dana

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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.

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@tjgisewhite

@azdan99 first congratulations on your 17yr. heart. Second, what are you still taking the Cellcept for?

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That is part of the protocol of the transplant center.

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@rosemarya

@stephanierp, It is awesome to hear that you are doing well! I'm curious, Have you been back to the transplant department to see your doctor in person since your return home?
I have been taking tacrolimus and cellcept since my transplant in 2009, with minor dosage adjustments along the way. These meds are working well for me with a liver and a kidney. I am going to share information on both meds, but I have not seen any research on the long term effects of one vs the other. I think that your transplant doctor could help you with that information as well as information for why one is best for you over the other.
https://www.mayoclinic.org/drugs-supplements/tacrolimus-oral-route/description/drg-20068314
https://www.mayoclinic.org/drugs-supplements/sirolimus-oral-route/description/drg-20068199
If you will accept a some advice that was shared with me – Find a time for taking your meds at a time that will be the most convienient for your schedule. Remember that you will need to take the anti-rejection medications for the rest of your life, so do what will work best for you as your life returns to normal and your activity increases. My selected time is 8:00 AM and 8:00 PM. I have the alarm set on my iphone.

I hope you have a good visit tomorrow! I have never had a video chat with any of my doctors. I would love if you would drop a line and tell me about how it works for you!

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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!

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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.

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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?

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@cmael hi yes that is one way of trying to combat a virus. Mine is Parvo b19 and I actually get monthly ivig treatments but they cut back my immunsupresent to just 1.5 mg tacrolimus twice a day and no cellcept as long as there is no rejection issues to help your immune system combat the virus. Realize also I'm not a doctor and I'm also 2.4 years post transplant so each case may be different. But I hope that helps and I also have a lot of faith in my team at Mayo.
I hope you have a blessed day
Dana

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Transplant Medications, anti-rejection medications, immunosuppressant medications – We all take them! Here is a Trending Newsfeed Posts that I want to share with you:
Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/page/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
FYI -The Trending Newsfeed Posts are seen at the lower half of the opening Mayo Connect Page – or can be accesses at Pages>Transplant>Newsfeed https://connect.mayoclinic.org/page/transplant/
The transplant page is written ans presented by the transplant staff. It designed to bring relevant and informative transplant information directly to you.

Enjoy your day. I would love to hear from you. How are you handling or learning to live with any side effects?

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@ladydidehart

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!

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@ladydidehart, I'm just wondering, have you been able to go for your 4 month check-up yet?

The 4 month check-up is a big event and I want to invite you to share some of your exprience like the schedule of tests, .procedures, and maybe any suggestions for those who are anticipating their first follow-up. Here is a discussion – Transplant Surgery and Early
Recovery: What's normal? https://connect.mayoclinic.org/discussion/post-liver-transplant/

What did you learn about your hair loss?

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I have heard this before but yesterday I got a message from CVS pharmacy with my Tacrolimus prescription. It said do not drink grapefruit juice or eat grapefruit while taking Tacrolimus. Has anyone heard this?

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