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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  • 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.

    • 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.

       

  • Hi!  I have the same issues!! I'm going into my 4th year post kidney and I would say I have half of my original hair - I tried rogain at one point but stopped and now I take biotin 10,000 daily

    hairdresser has been on this journey with me and as to date the top of my head all grew back now being patient for the rest to follow.

    it is sooooooo depressing but what can you do

    • 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.  i just copied the one i wrote above, okay?  but it is depressing isn't it?!  i just feel unattractive since i am now getting so many white hairs since the surgery and need to cut it and dye it!  and i have gained weight and my skin looks worse than it used to.  so i guess it is vanity, but it is also hard to go out or to work when your hair dosn't look right.  i can't do anything with it!  but i am hoping she can help me tomorrow and show me how to style it too!  take care!

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