Hair loss after transplant

[SujaA]

Hi friends, my daughter had her transplant in June 2022. She is taking tacrolimus, cellcept, prednisone , acyclovir, and K-phos. Her hair has been falling out a lot since then. I realize that compared to many of the side effects, this is not as bad. So her doctors are not bothered by it. But for a 22 year old who takes good care of her hair, it has been hard. Have any of you gone through this? Is there anything that might help? Do you think after a few months, her body will get used to these drugs and hair fall will become normal? Any suggestion is much appreciated.

[transplantwarrier]

hi there, this happened to me where my hair was falling out so much. I spoke to the doctors I am under at the clinic and they said that tac can cause hair loss. For me it has ease a lot recently to what it was like a few months ago

[SujaA in reply to transplantwarrier]

Glad to hear yours came down. Hopefully it will be the same for my daughter. Thank you for responding. It is very encouraging.

[Dna4christ]

Hi. That must be so difficult. I had my 2nd transplant at 25 and my hair fell like crazy after four months. It was everywhere and clogged up my bath tube! My tx team at the time suggested I take Biotin and use Nioxin hair system. It helped somewhat (better than nothing) but ultimately after 8months, hair fell less and less. Hair grew really fine since then. It does get better!!

Now, after 11years, the thickness never went back but I do have a lot of fine hair. It’s healthy and I get a lot of compliments on how shiny and beautiful it is

Hang in there!!

[hope1419 in reply to Dna4christ]

I know you replies about hair loss long ago, but I am going through it now, almost 5 months after transplant. I co tasted my doctor about a month ago, and she suggested the same nioxin. My question is, did you keep using it dmfor life or at so.e point you stopped it. Dr. Said if I stopped, hair would fall. Not that it matter, because I feel my hair is falling even worse now.

[Dna4christ in reply to hope1419]

Hello there! I completely understand your concerns. I only used nioxin for about a year or so. Never used it since then because they are pretty pricey. Your hair will eventually stop falling at about 8months so it’ll start slowly decreasing before then. All your hair will grow back baby fine then it’ll almost go back to normal. My salonist told me that I have a lot of hair, it’s just super fine so can’t really tell. Overall I’m thankful for my hair now. It’s manageable, long, and pretty it’ll get better for sure!

[hope1419 in reply to Dna4christ]

Thanks for thw encoutagrment.

[Yankcg70]

I had my transplant at 18. That was 33 years ago. I lost my hair and unfortunately it never really came back like it was. It is very hard at that young of an age. Even at 52 its hard. I started wearing a wig when i was at work etc., but for everyday im ok with it to just wear a hat. The hair growth chemicals do work but to have to continually use them every day for the rest of my like was not worth the cost or possibly the long term effects of them. Im just grateful what the transplant has done for the rest of my life.

[refspd]

Hi. I had my transplant 22 years ago when i was 28 years old. My hair started falling out, about a year after transplant. I was losing my eyebrows and patches of hair on my head. I was taking tacrolimus, cellcept and prednisone. My doctors took me off tacrolimus and replaced it with sirolimus. My hair stopped falling out immediately. Not sure if this is an option for your daughter, but may want to discuss with her transplant team.

[aben]

I agree with the general consensus here so far: the hair loss is from the tacrolimus and it will slow down/stop after some time. I had the same issue after my transplant. The transplant team said they could put me on biotin but that it wouldn't really do much so i just shrugged the hair loss off and accepted it as just an acceptable side effect that came with the transplant. After a while the hair loss slowed down and then stopped with no changes to my medications and my hair didn't really look any different than it had before the hair loss started. You would be amazed at how much hair the average person loses. I think your daughter will be fine. 💕

[LongIslandGirl114]

I also had my transplant in June 2022, at three months and my hair started falling out at 3 months. My Dr said I could start taking Biotin (helps to promote hair growth) and Floradix which has iron and B vitamin. Dr said it could be from meds and or shock to the body. But would ask her Dr first before taking anything

[lkhenderson]

Hi, its been 4 years since my transplant and I am on the same meds. It is a the meds causing the hair loss. Encourage her to hang in there and be patient. It took mine about 9 months to settle in and started to see re-growth but I lost so much in the early months.

[WYOAnne NKF Ambassador]

I know this is really hard, but this is one of the side effects of her immunosuppressants. I had issues those first 6-12 months with hair loss. I take Myfortic (Cellcept) and Neoral (Cyclosporine). My hair loss resolved on its own, but a lot of people needed to let their transplant center know about this problem. You need to be her advocate and let the team know that this is a BIG deal for her.. My meds dose was reduced and helped me. There are a lot of "over-the-counter" meds for this that can help. Need to talk with your transplant team regarding this. It is pretty common problem.

I am 23 years post transplant and doing well!

[SujaA]

Hi friends, thank you so much for the advice and suggestions. It is really helpful. It gives us so much hope that there is good chance hair fall might stop and new hair grow over time. I will definitely let the doctors know about the impact this is having on my daughter and ask if anything can be done. Will ask if it is ok to take biotin. Her doctors are reluctant to reduce or change her medicines just yet. We had asked about it because her hands were shaking a lot and she was getting bad headaches. Luckily, as the dose of medicines came down a bit by the three month mark, shaking and headaches came down a bit. She wants to go back to school and study to become a dentist. So she was really worried. May God help hers and all of your dreams come true. It has been a blessing becoming a part of this community. It does not feel like we are alone trying to figure out how to deal with life after transplant. Thank you all so much! May God bless everyone.

[Parkerbarker in reply to SujaA]

Also hair fillers actually work pretty well in the meantime,just make sure you get close to hair color as possible.

[Stexx]

hi, I wouldn’t worry too much, from experience of taking it since my transplant in Nov 2018 I’ve found that after initially getting very thin, that my body has gotten used to the drug, and it does get far better. I got quite concerned during the first year, but have found mine has all come back.

[SujaA in reply to Stexx]

Hi Stexx, thank you! Your experience gives us a lot of hope. Hopefully my daughter’s will come back too.

[Okie01]

Hi, I’m 21 and had my transplant in January of this year. My hair started falling out 4 months after my transplant and stopped falling a month or two later. Mine was a delayed stress reaction to the transplant and my hair is starting to grow back in normal again. I had been taking biotin for months before the surgery and my doctor doubled the dose when my hair started falling out. I can’t really tell if it helped or not. My hairline is still pretty thin and fragile but the thickness of the rest of my hair never changed.

[SujaA in reply to Okie01]

Hi Okie01, thank you so much for responding. Happy to hear that your hair is growing back now. Hope it will be the same for my daughter. She is going to ask her transplant doctor if she can take biotin. Best wishes to you! You are close to my daughter’s age.

[gardengirl97301]

I lost a lot of hair! My nephrologist told me I’d more than likely lose hair after my transplant so I was expecting it. I had my transplant September 2019.

[SujaA in reply to gardengirl97301]

Hi Gardengirl97301, did yours grow back too? We were not warned, but anyway, transplant was the only option. It is heartening that we can all share our experiences and discuss our concerns so candidly here. Thank you for sharing.

[gardengirl97301]

Yes, it has grown back. I wore a lot of hats for a full year because it was so wild. My doctor also said it may come back thicker than before. There’s hope!

[AENEASavc]

I have worn various wigs for years. It is an excellent solution. I get many positive comments about my "Hair". Go to a good wig store, pick one out, get it fitted, and enjoy. I did not get real hair because it is harder to care for. Take a look at actors on TV. Look closely. They wear wigs or hair pieces!

[BabyTee]

I had my transplant 2022 and started losing hair at about month 5, and it has stopped. (I was most annoyed by my eyebrows falling out, because they get into your eyes.

What worked for me was taking the following:

Nature's Bounty Hair, Skin, & Nails (5,000 mcg/serving) - I took the 3 pill "serving".

Youtheory Collogen plus Biotin. The serving is 5 pills/day. - I took the 5 pill serving for about 6 weeks until my hair stopped falling out. After a month of no hair loss, I dropped to 3 pills a day and plan to wean myself off of the pills, eventually.

I am not certain these pills are what helped my hair, but they may have. My transplant doc told me that if it made me feel better, to go ahead and take it. They said it won't hurt, and they don't acknowledge biotin helps.

Regarding the tacrolimus side effects, I had hand tremors, and blurred vision part of the day, but my blood work was normal. They dropped one tac pill and then my trough level was too low, so they switched me to Envarsis, and all my side effects went away. They thought my peak level of tacrolimus was too high and that caused my two problems. For me this was a solution. Check if your insurance covers it, though, and what the costs will be.

[SujaA in reply to BabyTee]

Hi Baby Tee, thank you for the advice. My daughter is checking with her transplant doctor if she may try biotin/collagen. She has her appointment later this month. Hopefully that helps. Glad to hear it helped you. My daughter’s doctor said he would like to wait for some more time before changing from tacrolimus. Envarsis is controlled release tacrolimus, right? We will ask doctor about it. My daughter is planning to start dental school next fall. So she is so hoping that hand tremors go away. It’s definitely better than right after transplant, but is still there. My daughter also gets headaches, sometimes really bad ones as a side effect. May be envarsis will help with it. I did not see anyone mention headaches here. I wonder if that’s not a common side effect. Thanks for the advice on insurance. Very helpful. Will check. Best wishes to you. Be well.

[Hidden]

Your daughter may have a low level of Vitamin D and/or iron or zinc. Perhaps she can get her vitamin and mineral levels tested to see what she is low in, and supplement.

[SujaA in reply to Hidden]

Hi BlueSkyAngel, she is low on vitamin D and has started taking supplements. Hope that helps. Thanks so much for the advice.

[AENEASavc]

I got a beautiful wig. I highly recommend this, which solved my problem

[Pickleball2019]

hi there. I am experiencing the exact same thing! Ironically my transplant was also June 2022. I’ve read on other posts that hair lost in women after 5-6 months is not uncommon. I feel for you daughter. Im 49 and it is causing me anxiety. And my doctor said that makes hair loss worst. My doctor said to take biotin and would take at least 2 months for it to kick in. I’ve been taking it for about 3 weeks. I haven’t seen anyone post anything else yet. So let me know if you hear and other treatments. I’m thinking about using a shampoo to help strengthen the follicles but haven’t found anything yet.

[SujaA in reply to Pickleball2019]

Hi Pickleball2019, my daughter has been taking biotin for 3 weeks. She also got switched to slow release tacro enversus. Hoping that it will make a difference with hair loss. We think the loss is slowing down. Not sure if it is because there is less hair on her head now. On the positive side, taking Envarsus has helped with some of the other side effects like hand shaking and headaches. Good luck to you. Hope you begin to see positive change soon.