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

@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!

I take 1 mg Tacrolimus 2x a day; Myfortic 2x a day; and because I am only 11 weeks post-transplant, I am still taking Valcyte 1xdy and NebuPent 1xmonth (because I am allergic to Bactrim). I have had some stomach issues post-transplant, which I am attributing to Myfortic - not on an ongoing basis but about once a week. I'm not sure a lot can be done about that but will raise the issue with my doctor on our video chat tomorrow:) I take my medicines with food morning and night, but find I can be off half an hour to an hour, so I may need to rearrange my schedule a bit to be more consistent. Jolinda, I might try your idea of waking up early to take meds and then going back to bed!

The NebuPent nebulizer treatments are very rough! It burns the esophagus on the way down- like a chemical burn - and then causes asthmatic reactions for me for up to a week. Because of this, my doctor is switching me over to a drug called Dapsone. I only need to take the Valcyte for a total of 3-5 months and the Dapsone for a total of 6 months, so it is short-term stuff. And I can handle most things, for short periods of time.

I am interested in the research on Tacrolimus vs Sirolimus, in terms of long term challenges.

Thank you so much for your kind words and the link!

@kidsmomof9, I am happy that you have joined this discussion. We are all patients and we are all learning together and supporting each other when we share our experiences. Thank you for sharing. I hope that the biotin will be something you can try. I was told 2500 would be okay for me to take after transplant and my hair and my nails improved (My finger and toe nails, suffered miserably during my months with critical liver failure.)

Did you know that on Connect there is an entire discussion group for Autoimmune Diseases? I invite you to take a look; to join in; and share with your family.
https://connect.mayoclinic.org/group/autoimmune-diseases/