Hair loss

[LBatl]

Has anyone experienced hair loss? I'm taking Tacrolimus 3x daily at 1mg each and am losing a lot of hair especially in the top. I have been taking biotin since before my Transplant six months ago. Lambdapil hair lotion was recommended by my Dermatologist but could not get a clear answer from my Transplant Team. Any suggestions?

[Amyb93]

Hi! I’m 6 months post transplant as well and started having hair loss 2 months after surgery and it has slowed down in the past month. My hair loss is minimal right now. I have a bunch of tiny hairs growing everywhere. I have a dermatologist appointment next week. I was told by my team that it could be from tacro and/or the surgery. Surgery and anesthesia causes hair follicles to go into the telogen phase which is the phase that hair normally falls out. So after surgery we have more hair in the telegen phase than usual so more hair fall out at once. It can last from 3-6 months after hair starts to fall out. I know it sucks i’ve tried a lot things to help it but i think it is a waiting game .. message me if you have questions!

[LBatl in reply to Amyb93]

Thanks for responding, I think I'm going to try the lambdapil lotion recommended by my Dermatologist as the hair loss seems to be getting worse. What are the things that you tried and did it help?

[Amyb93 in reply to LBatl]

I tried biotin, supplements, collagen powder, shampoo/serums and right now silica. It’s all approved my my transplant team. I always go through them. I put the collagen in a smoothie and like the other benefits also. My hair has been very dry and brittle also.

[LBatl in reply to Amyb93]

So did the hair loss decrease?

[Amyb93 in reply to LBatl]

Yes! But i think it is more du to time passing by than anything i took. My hair loss is very little right now. I have a lot of new growth coming in!

[TeamO in reply to LBatl]

I am 4 years post transplant. I suffered with significant hair loss starting about 6 months after my transplant until about 1.5 years post transplant. It was hard, but I believed that it would get better and absolutely did. I used Biotin and still do. Now my hair is long again and looks and feels healthy. Not as thick, but very close. Mine was pretty dramatic and my transplant team started me on Rogain, but after 30 days I stopped taking it. (It causes more loss before it starts regrowth). Be patient, it will improve. I kept my focus that I was blessed that I had a great kidney and the hair is nothing. But I would be lying if I said it didn’t bother me. It will get better - I swear!

[Rmatthew]

Hey, I too suffered from hair lost post transplant, very badly, I now have barely anything on my head these days, luckily I started shaving my head about 3 weeks post transplant, but it’s coming up to 6 months post transplant for me, I seen the dermatologist last week and they’ve recommend the stuff people have posted in response to your post, and they said they’ve seen a lot of success in people’s hair growth returning a while after transplant, should 100% talk to your transplant team about it! Congrats on your transplant!

[PostivelyJo]

I suffered hair loss 6 months after transplant . It was very difficult to deal with emotionally. I had very good hair before which I now realise I took completely for granted. 17 months post transplant and I no longer fear brushing my hair . It’s finer and dryer than it was. My children tell me it looks normal as do friends but I’m not convinced and I still stare at an unknown face each morning ! But ..... I am 57 and finer hair comes with age for some women. It will grow back and as others have said it’s a number of things . The Tacro , the body shock , the surgery , anaesthetic .... just keep on going and believe it will happen.

I found this website because of hair loss and at the time I’d never have believed it would come back . It will , it may even come back thicker .... it has for some on here .

Well done with all you have coped with so far .

Jo

[PostivelyJo]

Ps .... try the peptide serum by The Ordinairy Co. when I started using this it felt as if hair loss stopped in its tracks . No idea wether it was the product or the natural course of events . I’ve just brought another bottle to see if I can boost the remaining part of my hair that seems fine ..... the fringe and the sides .

[kidneygurllll in reply to PostivelyJo]

ooh I had this on my list but now will positively try!

[meggy619]

I was losing hair Pre Transplant, however Post Transplant it is back to normal.

[LBatl]

Thank you all for your comments and encouraging words. I do feel very blessed for getting a kidney and if this is a part of the journey then so be it. Congratulations to you all on your Transplant!

[Ynnep]

I, too have had extensive hair loss. I'm 1 1/2 years post. I'm taking Tacrolimus 1mg 2x daily and Myforic 2 times a day. Team started me on Biotin and Zinc. Lately it seems that there may be new growth. Due to Covid lock down, I can not go to my stylist for help. So I guess that patience it all I have. Good luck. It seems we have a lot of company experiencing the same problem.

[AndrewT]

Dear LBacote,

Yes Hair Loss IS, a distinct, possibility- if act, I might say- almost inevitable.... to some extent. In My case my, until I was Ill, very thick hair has gone 'Thick and Thin'... but, at least, at nearly sixty (59 in a few days) I haven't 'Lot' it all!

Putting 'Things' in Context, and sorry to be so 'Blunt'.... you have had a Transplant, are off Dialysis, are Probably 'Feeling' considerably Better- is a 'little' Hair Loss so bad? Didn't you Dream of, being 'Free' from Dialysis, and now you ARE.... Isn't THAT the Important 'Thing'?

Congratulations and 'Enjoy' the Freedom, my friend.

AndrewT

[LBatl in reply to AndrewT]

Yes AndrewT it is! If you read my story I mentioned that as well! Just wondering if the rest of my community was experiencing the same thing. Nothing like commaradie and encouraging words and information. Just fyi, I was fortunate enough not to be dialyzed, and am ever so grateful! Thank you for your comments; however blunt they were.

[smmahone]

Hi. Mine was bad started 5 no post transplant. Eventually diagnosed with Telegum Effluvium. I had verging thin hair to begin with. Did all the things people listed also took prenatal vitamins. It was so bad and never really got better so 16 no post I traded Trac for Cyclosporine. That was 5 months ago. I know have hair all over. Will suffer thru this for awhile then go back to Trac. It is very hard to deal with . Hang in there. Use good natural shampoo and be kind to it

[May4]

I was suffering very bad hair loss on tacrolimus about 6 months after my transplant. Also very shaky hands. My doctor switched me to sirolimus (rapamune) and my hair loss stopped. I was told sirolimus is not typically used right after transplant because it inhibits wound healing. I've been happy with sirolimus overall, I did have a few odd mouth lesions in the first 6 months taking it (Doctor said it was a known possible side effect) but they went away and I've been on sirolimus about 6 years now. There are other weird possible side effects with sirolimus of course, and changing immunosuppressants was a bit scary.

[LBatl in reply to May4]

May 4, Tks for your response.

[kidneyrecipient]

I am 6 1/2 months post transplant and have not experienced hair loss yet, but I was using Rogain pretransplant and perhaps that has mitigated the loss. But, I realize it is early yet and will see how it goes!

[Cienapotr]

Has anyone visited a trichologist for a consultation? It would be interesting to hear advice not only from a team of transplant specialists but also from a specialist who studies hair cover. I understand that a trichologist won't solve my problem, but if there is more I can do for my hair, I would like to know what it is. Hair loss was a big stress for me because I loved my silky hair. I'm a fan of natural skin care products, so I used Burdock root aptekastore.com/en/burdock-... and various natural oils. I'm happy I received the transplant and understand the need to wait. But I can't stay calm, I have to do something for myself.