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

Anyone since the last post found anything that may help men with hair loss? I’m new and had my first liver TX 2 months ago and then my second 1 month ago. I noticed since my first that my hair started thinning. My hair already had gone prematurely gray when I had a bad immune disorder flare up that caused me to almost go sceptic 12 years ago. I was in my mid-30’s and was grayer than my parents lol.

Congratulations on your transplant.
I had lost half of my hair due to COVID, then I lost half of what was left after the transplant. I tried Biotin for the first six-eight months with no help, my hair continued to fall out. Then I started on BioSil, which my transplant team ok'd (I check everything out with them first). Then my hair started the turn around. My hair is now thick again. However, the texture has changed some. I still have one spot (about the size of a nickel) that you can see my scalp, which I am going to try something topical, which the salon I go to recommended, and see how that works. I will let you know though if it works.
I have been going to the salon (or having them come to my house for the first few months) to have my hair colored since 3 months after my transplant. However, they use a very gentle product (Redken's chromatics) that has no ammonia (no fumes). Since, I am a double lung transplant recipient, I am very careful of my lungs and keep my mask on the whole time.

Hi, @brendag60. It is really disappointing, isn't it, when we begin to feel so good after our transplant...until we look into the mirror! I remember that my hair was dull, wirey and thinning. I also remember that I didn't really care until My recovery was well underway. I also had problem fingernails that were dark and brittle. so at my 4/5 month check up I asked the transplant dermatologist what to do. He told me that some patients have good results by taking biotin, and suggested the amount which I don't remember. He said it could take a while, and it "might" work for me, but he also assured me that my labs were good and I was eating healthy foods, and that in time, my hair and nails would be normal again.
As for my hair., my beautician/cosmetologist who specialized in working with cancer patients had me use gentle shampoo and conditioner. I did not get any hair perms or get my hair colored. If you have a cosmetologist in your area, you might want to consult with them. Be patient because your hair will come back.
I remember going hiking at 9 months post transplant and while my hair was continuing to shed, my nails were coming loose and snagging on my clothing, so I actually wrapped each fingertip in surgical tape and wore gloves to protect them. Sounds yucky as I write this. I even figured out how to cut a fake nail covering out of clear surgical tape to cover my nails. I did n ot want to use any chemical products on m y nails. It worked for me and if anyone benefits from this idea, you/they are welcome to try it!

Brendag60, Congratulations on your recent kidney transplant! Other than your concern about hair loss, How is your recovery coming along? Have you been able to return to any of your normal activitites yet?

I am in my first year of kidney transplant. I have lost a lot of hair, it actually started while I was on dialysis. The right side of my head is thinner than my left. I am still dealing with the hair loss issue. Since I have curly hair, it doesn't look the same anymore. I have already purchased some wigs to wear on days that I don't want to do anything to my natural hair. I am using biotin haven't seen any improvement yet but I am hopeful. I just don't like seeing my scalp on a daily basis and with this heat here in SC it's too hot for a wig.

I have been taking BioSil for almost a year. My hair has come back to almost its original thickness. I had double checked with my transplant doctor and he said it was ok to take. I have still been taking it so that it helps my skin that has gone very thin and my nails. My nails are now stronger than they have ever been.

Hi @blbird33 😊
I am a three year post kidney transplant patient that takes Envarsus XR too. Which meds and dosages do you take in addition to Envarsus XR?

Yes I am losing my hair too, I will take to my doctor,

How long ago was your transplant? Just curious to know how long you’ve had tremors. The propranolol (10mg /2x day) has helped me with my tremors and my headaches. Afain I’m on Envarsus XR (4mg per day)

Good to hear from you! I am on Envarsus XR 0.75 times 3 tablets. I still have tremors but much less. Do we just resign ourselves to living with these shakes, being unable to type easily on the computer, trying to lessen tremors by taking anxiety meds? Dr, Peddi told me if Envarsus XR does not work for me he would help me find a med that would work. I am getting to that point maybe. Anyone else change off Envarsus XR? Side Effects of new med? I may be trading one bad experience for another. Ideas? Not an easy journey. And grateful for new kidney too. Blessings, BB

I had a kidney transplant 6 months ago (01/23) and I noticed significant hair loss start around the 4 month mark post transplant. Now at 6 month post , the hair loss is pretty bad, I was told by transplant team to use Biotin to see if it helps. Around the same time (3-4 months post op) I had extremely low white cell counts and they put me on Neupogen injections ( 1 per week /for 4 weeks) u don’t t know if this had anything to do with hair loss but that’s when I started to notice it. I’m also on ENVARSUS XR (4mg ) , prednisone (5mg) and Mycophenolate (cellcept 100mg /2x day) honestly my body has not taken ENVARSUS / Tacro well at all , I’ve had really bad tremors and headaches everyday so that’s when they switched me to ENVARSUS XR which helped a little with tremors and for the headache they put me on Propranolol (10mg/ 2x day) that has helped with the headaches. I’m very grateful for my new kidney but it has been challenging at times with the meds I am on. I don’t feel my best yet but I’m hopeful I will eventually. Best of luck to everyone