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

I’m five months post liver. About six weeks ahead I started losing a lot of hair. The team put me on Biotin and within two weeks I could see a difference that the hair was
not falling out as much.

Also had hair loss right after transplant. A lot but it stopped within a few weeks.

My hair loss didn’t start until 6 months post kidney transplant (May 20, 2022). It’s not bad but is still troublesome. Ladies, keep the faith. It’s totally out of our hand. I’m thankful, grateful and blessed
Merry Christmas

I started the Biotin a couple of weeks ago. I’m trying be gentle when washing and brushing. I hope you continue to see less hair loss.
Blessings

@deakinoh, I also had thinning hair after my transplant, and took biotin after talking to the dermatologist during my return to Rochester for my 1st follow-up appointment at Mayo. My hair dresser also recommended using a gently shampoo and conditioner that she supplied for her cancer patients. So in addition to the gently combing and brushing, that is something that you might want to consider.
I also had damaged fingernails after transplant. They had turned paper thin beforehand and they grew out afterwards. So I had old ones growing out, and new ones coming in. The doctor also said biotin is good for nails.

Have you noticed a change in your hair texture?

My hair was FRIED for months after transplant and then I lost most of it for about a year. Once I was just down to my tacro dose it seemed to grow back better than it had been in many years. Just be patient. Your body is still recovering and is using the nutrients for the most important healing first. You’ve been through something very huge. Give your body time to recover ❤️

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

@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?

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.

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! ❤

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.