Hair loss after transplant, probably Tacrolimus: Anyone change meds?

Hair thinning is one of several possible side effects tht some of us experience. I think that it is worth recognizing that our powerful medications which protect our new organs, come with some side effects. I know that each one of us can and will react differently to medications, just as each of us has a different transplant experience and health history.

Here is some basic information about Immunosuppressant medications by Mayo staff in the Transplant Blog -
-Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
and
Here are some transplant support groups where members are sharing their experiences and asking questions about medications - I invite you to join in anywhere - And if you want to direct your comment/question to a particular individual include their @name.

-Transplant anti-rejection medications. What's your advice?
https://connect.mayoclinic.org/discussion/your-anti-rejection-medications/
-Anyone experienced Elevated Liver Enzymes from Cellcept or Tacrolimus?
https://connect.mayoclinic.org/discussion/kidney-transplant-elevated-liver-enzymes/
-Mycophenolate or Myfortic: Do you have GI side effects?
https://connect.mayoclinic.org/discussion/mycophelonate-and-side-effects/
-Tacrolimus blood levels: Do yours vary?
https://connect.mayoclinic.org/discussion/tacronlimis-blood-levels/
-Memory issues while taking Tacrolimus
https://connect.mayoclinic.org/discussion/memory-issues-while-taking-tacrolimus/
-What did you experience when cutting down Tacrolimus?
https://connect.mayoclinic.org/discussion/what-did-you-experience-when-cutting-down-tacrolimus/
- @roxanne12345, @hello1234, @bobinnevada, @jp1023, @crystalfaye, @mollyv - The grey silhouettes do not do you justice! Do you have a photo or a picture to personalize your account? Here are instructions -

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Thank you for all that you do to encourage healthy living and organ transplantation 🤍

Hello, Hello1234
Thanks for the response. My nephrologist seems to like the level around 4-6 where as the transplant team wanted it between 6-8, so I was a little confused.. All in all kidney function is good, creatinine is 1.08 last blood draw and I am feeling well.
I have PKD, and am scheduled for surgery next week to have the native kidneys removed because of the size of them. Anyway they wanted to wait at least year to make sure the new kidney was stable. Nervous, nervous nervous.
I dealt with the BK virus 3 months after the transplant, they cut the cellcept out for a month and slowly put me back on to 500 bid, got it down to less than 250 and now it's undetectable.
I hope you are doing well after 2 years and feeling well.
Bob

Hi @bobinnevada 😊
I hope all is well with you! Hopefully, @roxanne12345 will jump into the discussion too. I am a kidney transplant patient. I take 6mg Envarsus XR (Tacrolimis) in the morning and I am normally around 6 blood level for Tacrolimis.
I think I need to take higher dosage because I take my meds with food in an attempt to buffer my stomach.
How are things going for you?

Hello Roxanne, my name is Bob,
I had my transplant a year and 4 months ago, I was just curious about the immunosuppressant drugs you take.
I'm taking 500mg cellcept twice a day,1 mg prograf (Tacrolimus) twice a day and 5 mg predisone in morning.
My prograf level sits around 5.9
I was curious how much prograf you take and what your level is. If I'm being too nosey tell me.
Thanks and congratulations on 4 months

@roxanne12345 😊
Yes, let's definitely keep in touch! I was diagnosed with BK virus back in August. I heard it can take almost a year to clear.
If you are not taking Cellcept, are you taking 5mg or 10mg Prednisone with your 1.5mg Tacrolimis or something else? Is your BK viral load getting closer to 1000?
I am hopeful that my BK may clear in a couple of months (fingers crossed!)
I didn't know that covid can cause blood clots. I am happy to hear they are protecting you with thinners. Be safe and wear your mask indoors when you are close quarters with strangers. I know it's easy to forget that we are immune suppressed when out with friends.

Hi, I enjoyed hearing your story. I think I got the blood clots from having Covid for three weeks. Now I’m on A blood thinner too. I am not taking any Cellcept yet, until my BK titer stays below 1000. Then I have to go to 500 mg per day. My hair loss has been better recently. I have been taking 1.5 mg Tacrolimus daily. I take a
3000 mg Biotin and vitamin D and calcium, and a multiple vitamin every day. I have noticed that my eye brows and lashes are growing back, not sure about my hair yet. It’s a long process; we always have to be watchful of what we eat and who we see, and what we do. Sometimes I forget that I’m immunocompromised. Keep in touch; it’s nice to know I can share my trials with other people.

Hi @roxanne12345 😊
It's great to meet you! Congrats on your 4 month post kidney transplant anniversary!
I am almost at my three year post kidney transplant.
We have so much in common! Very thankfully, my new kidney is working well too.
My only challenges are coming from the immune suppression meds. When I was at my 4 month anniversary, I was taking 1000mg bid Mycophenolate and 6mg Envarsus XR (Tacrolimis) and it gave me adverse side effects like neutropenia, leukopenia, high liver enzymes. So, I was going to my local cancer center for Procrit shots on a regular basis.
At 8 months post transplant, I tested positive for active CMV virus so my Mycophenolate was lowered to 500mg bid and Valcyte was added. My CMV was at <200 in 6 weeks. My neutropenia resolved after the reduction of Mycophenolate.
At my two year anniversary, I tested positive for BK virus. My Mycophenolate was reduced in half again to 250mg bid and 6mg Envarsus XR (Tacrolimis). It's been 5 months since my BK diagnosis and I am still testing positive for BK virus, but the numbers are improving.
Do you have BK virus now and was your dosages reduced?
Was your blood clots caused by the BK and what was the solution?
(I also am now taking Biotin for the hair loss. But my infections have been taking center stage in my list of concerns. I actually think the hair loss is showing a slight improvement with the Biotin).
@roxanne12345 Please let me know about your dosages and meds and if your BK virus, neutropenia, and if your blood clots have resolved with the reduction of immune suppression meds.
The transplant teams see this all the time, so for them it's just another walk in the park. I have full confidence that"all will be well" for both of us after the med adjustments reach the perfect levels to avoid infection (and not allow rejection). It's a balancing act for sure! ❤

I had a transplant 4 months ago, and my kidney is working fine, but I have had many other complications. To name a few, Covid, BK, virus, blood clots, and neutropenia. I’m still able to go about my daily life, for now, and I feel good, but I am losing my hair too. I take Biotin, Calcium, D3, multiple vitamins and eat pumpkin seeds. I don’t know if this will help, but we shall see.

@deakinoh, I don't color my hair, but others do and have expressed their concerns and have also shared their experiences. You will want to read what others have shared in this discussion. It is a short one, and you can easily read the posts in order from the beginning:

Can I color my hair after transplant?https://connect.mayoclinic.org/discussion/hair-dye-after-transplant/

Have you colored your hair since your transplant?

Thanks for the shampoo/ conditioner information. It’s forth a try. I also color my hair. I suppose that doesn’t help.