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

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.

@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.

@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

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

I had a heart Tx 17 years ago. I now take 0.5 mg of tacrolimus twice a day, and 1000 mg of cellcept twice a day. Never have had rejection and no drug side effects.

This is reassuring to me since I’m just 3 months post transplant. How many mcg of Biotin do you take per day?

Thank you Rosemary!

@ladydidehart, I want to welcome you to Mayo Connect. It is wonderful news to hear about your recent kidney transplant! Congratulations on your 3 month post transplant recovery. I assure you that you are in good company here with other patients who share a similar concern.

In the discussion -Transplant anti-rejection medications. What's your advice? - you will meet members who have asked about and also shared their own post transplant hair loss experiences. Click on the blue link, and you are there. I will meet you there.
I am also going to request that @colleenyoung move your post to that discussion.
https://connect.mayoclinic.org/discussion/your-anti-rejection-medications/

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?

@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!