I have heard that 'most' of the hair grows back if you discontinue Prograf, and I have also heard that the hair loss subsides at around the 6 month post transplant mark.  I am at almost 2 years and I am still struggling with my hair.  I used to have very thick, long, nice hair and would even get compliments on it.  I am at the point my mother thinks I should buy a wig.  I am thinking that there are just certain people who are sensitive to Prograf and maybe that is why my hair has suffered more?  Have any of you been on Prograf for  years and never got the hair you lost back?  Or  even part of it?  Did you ask to switch to something else?  Did you try any type of shampoo that you felt worked, but did not dry the hair out at the same time?  Thanks for any info.  Hope you are well out there!

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  • hi im going 5 yrs transplant  on March 2021 and i just notice last year only that my hair is falling, not much though but just lately this year im noticing its a lot now than b4. i even ask my nephrologist if theres any of my meds that makes my hair falling, and he said nothing. im akso worried abt my hair definitely one of our anti rejection meds.

    • which meds do you take?  i think prograf is the main culprit, but that they all cause hair loss.  the prograf actually causes baldness - which is more than just alopecia!  you can take biotin, but my nurse told me to take 1000 and that hasn't really done much for me.  are you on prograf?  prednisone?  cellcept?  some of the folks on here say they take 5000 biotin and i am going to ask dr. if i can take that much.  i know that too much can throw off a blood test and i know that you should take as few and as little vitamins and herbals and supplements as you need.  if it is approved then i might start taking that pink bottle of pills that is for hair, skin, nails.  i want to add collagen, but not sure it is safe for us to take collagen.  i have also hear that saw palmetto is good for your hair and in turn helps your skin - but again, it is a supplement/herbal and we have no idea how they will be with a tranpslant and on the meds we take for it.  so they don't recommend it.  another thing - you know how you said it took almost 5 years for you to start seeing the hair loss?  well, i have now developed allergies.  they kind of came on all at once.  i mean, first it was mildew/dust now i think i could possibly be allergic to my cats and gosh i hope that is  not the case.  but i think the immunosuppressants we take end up weakening our system so much that it does not have the defenses it should have or used to have against foregin particles like dust, dander, pollen, etc.  but it took a while for it to start happening.  so it could also be the case that it didn't happen immediately for you, but after a certain amount of time it finally got your system weakened enough to trigger the hair loss.  not sure.  just something to think about.  i hate it for you and all of us.  i have heard of a shampoo called nioxin.  it is not cheap and i think you need to order it.  some say it dries out the hair though.  i figure it is worth the try though.  i know you can safely take 1000 mcg of biotin.  i just need to see if you can take more of that.  

  • I have been on prograf since July 2015. I am a liver & kidney recipient. I have been dealing with hair loss since then. I do take biotin & use shampoos that say they are for thinning hair, etc. The shampoo that I am trying now is called Biota Botanicals. I'm about to consider a wig! But that is just my story. I have talked to others in the past who said that their hair loss was temporary so I guess it depends. I am also on cellcept & prednisone so maybe that concoction also has something to do with my hair. I wish you luck & STAY SAFE! 😷

    • diane,

       

      thanks for writing.  i hate that for you!  yes - i believe that is the worst combo of drugs for hair loss, because i am on those exact same drugs.  i feel like the people who don't have to take prednisone with prograf fair much better.  or those who take prednisone without prograf, too.  i think that cellcept also has hair loss as a side effect.  i asked the dr. about it and she said it was mostly the prograf.  but i had decreased the cellcept for a while due to  bk virus and when i started adding it back i noticed more loss again, i also think that the cellcept has depression or emotional changes as a side effect as well, although most say it is only prednisone and possibly prograf slightly, but when i added the cellcept back i noticed a change there too.  so i definitely think that all the immunosuppressants cause hair loss.  i just think prograf causes baldness!  and yes, my mom is telling me to get a wig, too.  i hear you.  oh!  wanted to add that i have heard from sooooo many people that they lost hair after having covid!  and i had covid too.  so that is interesting.  i guess just all the stress it puts on your body and also you lose a lot of weight on it if you have a bad case of it.  i will look into that shampoo you are talking about.  if you don't mind me asking, can you tell me how much biotin you take?  i don't want to take too much and have it affect my blood test results or my transplant,etc. but the 1000 i have taken for over a year is just not enough.  you stay safe too!  

      • Omg girlfriend,  I take 10,000 mcg of biotin daily. Some days I take 15,000 if I eat one of the yummy strawberry flavored chewable biotin! Actually, the only thing that I have taken that interfered with the absorption of my meds was CBD. I have been a chronic pain sufferer for MANY years & thought I'd try CBD. It did seem like it helped a bit but after taking it for about 10 days, my labs showed that my prograf levels were nearly toxic! Subsequent studies have shown that CBD does in fact prevent the body from absorbing & or metabolizing prograf. I know that was off topic but I like to share any & all info that we as recipients need to be aware of. Anyway, do not be afraid to take more biotin. I've been taking that dose for a while & my drs say that's fine. I'll keep fighting for my hair as should you but I am fairly certain a lovely wig is in my future! Hey, it's a trade off. Our lives for our hair! Lol

        Also, glad to hear that you beat covid! Stay strong! 🙂😷

        • hey, thank you for telling me that!  did you feel like you had to pee more when you started taking high doses biotin?  when i first started trying the higher doses i was peeing more, so i went back to 1000, since that is also the only dose i was suggested to take.  i really appreciate you telling me about the cbd, because i was thinking about using some.  but i didn't know if it was okay or not.  i have just been told that anything herbal we really have no studies on and don't know about so be careful.  the thing is, we can measure levels of prograf, but not really levels of cellceptl.  if i eventually do get off of prograf, perhaps i could try the cbd oil then, but - i have no way of knowing if it is affecting the cellcept by increasing or decreasing the amount in my system - or belatacept - or prednisone, etc.  stinks not knowing these things, doesn't it?  i hear there was a way to check the cellcept levels but it was more difficult and not done often so it seems that it would be hard to get them to test it.  and if it wasn't approved then i would probably have to pay for it out of pocket.  yes, it is a trade off!  and a pretty good one at that.  we could do dialysis, but this is still a better alternative for most because of the hope of living longer.  yes, i was lucky to have beaten covid.  thank you!  you be careful and stay strong too!

  • Had a lot.  Started on Biotin (5K mcg) 4 years ago (TX was 5) and I think I have better hair now than I did - and my nails grow super fast lol.

    Results may vary - I never had a ton of hair but it was very bad at first.

    Good luck.

    • hi Jeff are we allowed to take Biotin?? where can i buy that? is that OTC?

    • and thank you!  crossing my fingers!

    • glad to hear your hair is better than it was when you started!  i have been taking 1000 mcg every day for over a year but the hair loss continued, and i will admit it is also that my hair is now really weak and i have a lot of broken hairs so it is really thin on the bottom.  i have now started to get a lot white hairs too.  i maybe have one or two before the surgery.  i was worried to take any more than 1000.  my old nurse coordinator told me to do 1000.  i did take 2000 for a short time, but it seemed like i was going to the bathroom more often and peeing less each time which made me worry a little, so i pulled back.  however, i am also on prednisone and i heard hair loss is also a side effect of pred.  wish i could be like a lot of folks on here who were never given pred to begin with!  too late to get off it now they say.  but, i have also seen that cellcept and belatacept can cause hair loss too.  so i think it might just be a combo of all the immunos combines.  i was telling my dr. that i feel like my body might not need as much suppression as others.  wouldn't my excessive hair loss possibly indicate that?  i mean, if your side effects are greater or more severe than others could you assume you are taking too much?  i was supposed to finally get off of prograf on dec. 1st, but due to covid and pneumonia i missed my belatacept infusion in novenber.  then they wouldn't let me come back for the longest time.  now they are making me stay on prograf 4 or 5 months longer.  so i am still on four drugs.  prednisone, belatacept infusion once a month, prograf, and cellcept.  i was only taking 1 mg of prograf a day but then they made me increase on monday night.  i also wrote my nurse and asked if i could take more than 1000 of biotin and haven;t hear back on that one either.  but if your dr.'s seem to think it is okay to take 5000 and 10000 and you haven't had any problems with it then i might just do that.  michelle - i have lost 3/4 of my hair.  that is no exageration.  i never knew this would happen.  if i had known about the alopecia beforehand i would have cut my hair before the surgery.  i have to go get it cut to at least above my shoulders tomorrow and i hope it will look okay.  good luck with the rest of it growing back!  at one point i was on 6 mg of prograf a day and i would wash my hair and pull clumps out with my fingers and have to stick it to the wall so it wouldn't clog the drain, lol.  we will keep our fingers crossed!  i really love long hair because i wore it short for a while when i was a kid.  so i hope one day i can grow it back long!  but at this point i would be happy with it growin back in and not falling out or breaking anymore.  i think i might try a shampoo with keratin or collagen in it too.  thanks guys.

       

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