Kidney
Loss of Hair with Tacro, Biotin not working
February 22, 2023
in Kidney
I would like ideas about using Biotin Shampoo and conditioner for hair loss after transplant. I started it two weeks ago and I seem to shed more hair right after using it. I shed hair all day on my clothes after using it. Maybe the supplements are better? What dose do people use of the biotin supplements? Thank you, BB
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Transplant Patient
I never did biotin but I did have quite the journey with hair loss post transplant. Its grown back now, thicker and curlier, and my hair is one of the things I actually get complimented on most now!
I focused a lot on diet, and getting enough vitamins and minerals through bio-available sources. The other main thing I did was quit shampoo, hair products and heat. I switched to a no 'poo method (which I still do, though I'm not as strict with it now), and would exfoliate my scalp almost daily. I also brushed my hair a ton, always when it was wet, and then let it air dry.
I don't know how far out from transplant you are, or what your meds are, but reducing the amount of meds I was taking also really helped with my hair growth, I feel like. While it was falling out (I was almost completely bald at one point) I wore wigs, and then got extensions. I found a local hair stylist who worked with people who have alopecia, and she was really helpful as well.
I'm 2.5 years out now - I had extensions until the year and a half ish mark and now my hair is all natural and shoulder length.
Transplant Patient
I never lost my hair, but i went super gray.
Timmy's hair actually came in better post transplant and with the tacro. I think his body had a really hard time before surgery so everything worked better afterwards.
I really like Navy Hair Care for biotin shampoo and conditioner. And I use it all the time.
Post transplant I started loosing hair and looked for solutions. I didn't like the shampoo/conditioner they had out there since I am very picky on that type of thing. I decided to start a biotin supplement that is a gummy. I was told to get one that is just biotin with nothing else.
I am using: VitaFusion Gummy Vitamins, Biotin, Extra Strength, 5000mcg per serving
I take what is recommended on the back (2 per day) and noticed a difference ever since - hair growth and longer nails. I normally buy this from Target and they will sometimes run a deal on it. It is nice having a gummy supplement after all the other pills you have to swallow.
Thank you for this info. Will check this info with doc at TC. BB
I also experienced poor hair growth and loss throughout my kidney failure but definitely was worse post transplant- I actually ended up following a similar no poo method as @AliEm14 as I had seen her post about it on her socials and I can confirm her hair is 👌🔥
going no poo (no traditional shampoo or hair chemicals) has actually helped my hair a lot but also my skin in general! Far clearer and less dry now! And I actually have new hair growth again! It’s a bit odd at first as I am a mess of baby hairs all sticking up at random but my roots are so thick once again. My hair dresser was shocked when I went in recently for a trim!
@brookegurrad I went gray like over night when my kidneys failed! It was so odd I went from almost no gray at all to over 80% gray! It was an adjustment for sure!
What is the No poo shampoo you are using? I have experienced severe hair loss and I’m assuming it’s the immuno suppressants but no one seems to know… i’ve been to my Transplant team, a dermatologist, a hair, loss, specialist, etc. and I’ve been told it could’ve been my surgery. But that was over a year and three months ago and I’m still shedding. Any advice people can provide would be greatly appreciated.
I had tremendous hair loose after 3 months of taking tacrolimus (Envarsus). It was awful...doctor switch my anti-rejection medicine.
Some do say you do loose hair from surgery, however my hair came out in clumps!
Transplant Patient
@Ski73 what I did personally was rhassoul clay and wild sweet William. I just mixed them with water, and then poured it over my head and scrubbed it in. If you look up no poo methods you might be able to find something that works for you. I find I have to play around with it a bit to figure out what works for my individual needs
Well I guess I will try this Vitafusion gummy vitamin. I’m new on here and am really concerned about my hair loss.
It seems all are in agreement the culprit is Tacrolimas !
Other
I hear non-transplant people talk about Nutrafol and Thorne's biotin supplements a lot! I am not sure about how these work on people taking tacro.. I've also heard oral vs. topical is more effective, but this is just word of mouth. I haven't read any literature.
I tried using the biotin gummies and it didn't work very well for me. I'm thinking of trying the 'No Poo" method soon. My hair has been pixie short or close to it since I was diagnosed with CKD in early 2017. I really would LOVE to get it back to it's longer length and fuller on my crown again. This short cut really doesn't work well for my face shape now. (I've come to discover I also got moonface since transplant. So that's another thing...LOL)
I have been prescribed oral minoxidil and finasteride by a hair specialist and have been taking for about month and a half. I’m still shedding and it’s just plain awful. I will look up the no poo option. I’m so sorry to hear that many of you are experiencing the same…. I would greatly appreciate it if people would continue to update this thread if they find anything that seems to work. Thanks for all the replies.
Transplant Patient
I never had hair loss but I hear it is temporary and your hair will grow back nicely after max a year! It is due to Tacrolimus…
I went off tacrolimus/Envarsus due to side effects...one being tremendous hair loss...does that mean staying on it for 1 year that hair will grow back?
I changed medications and hair grew back but my creatine was better on tacrolimus/Envarsus.
THX!
Transplant Patient
Hi - that is what I have read and heard from experts - it will pass over time but if it is so bad - and your Drs are recommending switching - that is probably a good idea!
That hasn't been my case with Tacrolimus/Envarsus. My hair hasn't come back since I began using it after the transplant. I am just over 2 years post-transplant.
When discussing the medications with the Transplant pharmacist, even before my transplant, I recall her telling me it was either lose hair with Tacrolimus (A common side effect for us ladies) or get hair in unwanted places with the anternative. Well, I thought briefly about thast and came to an easy decision that I'd rather lose hair on my head and be able to wear a wig ot topper than have to start shaving all over in places where the hair really doesn't needs to be seen.
How to best prevent rejection is a personal choice, but overall our teams want our numbers balanced and our mental, physicalk and emotional healgth to be as well. Bloodwork will show all that as well as how well we follow the guidance the team provides us. And never be afraid tor ask questions when there is somewtihng you need clarified or don't understand.
Transplant Patient
Makes sense @Passick it I think we can do better! That is the reason I am so determined to raise our voices and push companies to develop better drugs for us. Not right that we have to chose between wigs and shaving!