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

@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.

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

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, 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

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 -

Personalize your account. Member profiles let you tell people about yourself and helps you find others.
1. Go to your Profile.
– Click your profile picture in the top right and select Profile & Settings.
2. Click EDIT to add or edit your:
– Name (optional)
– Bio (Tell us about you. Max 500 characters.)
– Profile photo (Use JPG, JPEG, JPE, PNG or GIF format. Less than 5MB in size.)
3. Click SAVE.
4. Click “I’m Done Editing.”

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

Hi @bobinnevada 😊
My local nephrologist also said 4 to 6 is fine and the transplant team said 6 to 8. When I spoke to the local doc office, they told me that you don't have to panic if occasionally you see a 4 or 5 in the mix.
My girlfriend had both of her PKD native kidneys removed after 1 year and things went very well. She was very nervous too, but everything turned out to be fine and the timeline the hospital gave her for recovery was shortened. She was home much quicker!
I have been dealing with BK for five months now. My Mycophenolate was reduced to 250mg bid, but not stopped. I don't take any Predisone. This week, my creatinine is up and GFR is down. I am going to be retested to confirm the numbers.
Not sure, what the next med adjustment is going to be. Maybe I will need a biopsy to determine rejection from reduced immune suppression or BK nephropathy. Not sure what the cause of the rise in creatinine is at this point.

Hello @bobinnevada
In regards to Tacrolimus 6-8 levels, I would abide by Transplant Team recommendation as they are aware of all the different variables they encountered in decision making during the transplant.
I have completed 3.5 years my Tacrolimus range is 5-7 and take 1.5mg of Tacro/day. & I have accepted that as a maintenance dose. I would be happy with Tacro dose got reduced to 1mg but I was told if ever I encountered a rejection episode.. it is tough to deal with that as time advances.
Best

Hi @l0lag0lag0b3 😊
It is great to hear from you!
You are giving excellent advice! You are correct that the transplant team knows "the scoop" about the donor match, etc.
Do you take your Tac with or without food (5 to 7 level)? Are you also taking 5mg Prednisone and 500mg bid Cellcept?

Just got my regular #1 buzz at the barber because the semblance of hair is no longer there after the transplant. Happily, the new barber said, "You have a beautiful head. It is perfect for a close buzz." And it is really easy to manage!
best always,
s!

Congrats @scottij 😊
It's always so great to hear from you! Happy to hear your #1 buzz cut went so well and your barber had such a glowing report of your head of hair!