Prograf hair loss

Hi: has anyone dealt with hair loss from prograf? I had a 2nd kidney transplant 5 months ago and my hair is very very thin. It's been falling out rapidly for 3 months and team changed me to cyclosporine 1 month ago but it is still coming out like crazy. Will it come back and if so when? How long after prograf use stops does this shedding stop?
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  • hi bettylou do you have an idea where we could buy prograf? I am a kidney transplant patient too for almost 5yrs by June.
    best regards Claire
  • @bettylou i am taking this tacrolimus and i have delt with the same problem. I would not say that I have hair fall but rather they are Thin sort of sparcity. Keep your hair short and wash them with good and healthy sampoo. This will help in the slowing down the problem.
  • Hello! I am a heart recipient, but I wanted to ask questions about the hair loss from Prograf.  I got my first heart transplant 24 years ago at the age of 23 and took cyclosporine the whole time without any kidney damage.  I just got retransplanted in August and they put me on Prograf.  I am having trouble keeping my creatinine at a normal range and I have some microalbumin in my urine.  Within the next monath and a half I am getting switched back to cyclosporine.  I have sever hair loss with the Prograf as well and just wondered if my hair will get back to normal and how long it will take after gettin off of Prograf.  Cyclosporine does make you shave your legs more, and you may have to wax a light mustache, but at least you have hair on your head.  I too feel that I am being vain about my hair, but I am 48 years old!  Any feedback would be welcome!!!!

  • I was looking over this thread with all the comments I seemed to notice in July 2016. It is now January 2017...I'm 18 days from my 1 year living donor transplant anniversary. Wow what a year 2016 was but as I still do labs every 2 to 3 weeks (which I like to do for peace of mind), I am at .88 creatinine serum and it's always a good feeling when I see good things on my lab results :) About the hair loss that many of us were struggling with. Mine started around 4 months post and was at it's worse Month 5, 6, 7, 8, 9 and started to reduce by October 2016. I mean hair still comes out but in NO WAY the handful that I had at first. Sure my hair is thinner but I am grateful no major scalp showing and my kidney is doing great. Eventually I have to figure out if I want to remove my native kidneys (I have POLYCYSTIC KIDNEY DISEASE and the natives are double the size of normal. Normal size is about 11 cm. So I have 2 at 20 cm each and a new one at 11 cm ). I am very small at 118lbs so I have no idea how I handle these organs , I still wear the same size as always and that's crazy amazing in itself. I'm on 3 mg tacro am and pm, 2.5 prednisone daily and 250 mg am and pm of Mycophenolate. I look forward to celebrating my first year of transplant in a few weeks. I am jumping back into the life I have had which was always travel (I am in the travel industry) so have taken the time to research EVERYTHING on vaccines, evacuation insurance, medical insurance for outside the USA and I am all ready for my first out of the USA getaway in Feb. I guess my sanitation OCD will benefit me post transplant though I've had it since my 20's. :) Finally I have a good excuse for it. 

  • I am 4 months post transplant and a few weeks ago, my hair started falling out by the handfuls. I already see a drastic thinning and drying of my hair and my scalp is more noticeable. I really dread taking showers because every time, I collect a handful of hair. I think somebody else said it earlier, you almost feel vain for being so upset about hair. I should be thankful for this life, right?! I guess it's a constant reminder that even though I feel great, I'm not normal. I take 20 pills a day, there are bound to be side effects. I have an appointment tomorrow, oh wait, TODAY (the meds have made me an insomniac), to get my hair cut.  It's my birthday and hopefully I won't cry lol. Instead I need to celebrate that I made it through this crazy year,  I'm alive and for the most part, very healthy.  And if I have too, I'll just shave my head and channel GI Jane.

    • Hi Stef, just wanted to comment on your pills you take , I was transplanted 10-22-15, liver-Kidney, I had the dreaded Hep-c, hair started thinning in January and seemed to have stopped in May, started Hep-c meds at the end may and at that point I was taking 35 pills a day, after 3 months of Hep-c med i cleared the virus, now I am back down to 30 a day and hair is thinning again, have gotten the attitude of heck with the hair, so glad to be free of HepC and the transplant is over, I waited 2years and 10 months for it, I also agree, wow 5 kidney transplants, and so many people waiting, I think it should be mandatory for being a donors
    • Hi Stefanie, I believe I said that about vanity since I am only human and let's face it...Hair is a big deal. I did great post transplant (January 26, 2016) and middle of May at 4 months my hair started falling out like crazy. I started taking photos every day to document the madness and torture myself. I was at 9 mg of tacrolimus but I believe the thinning may have started at 2 month post but not a big deal until CHUNKS of hair would DROP like water when I would wash my hair which I am all about organic sulfate free and use no products on my hair. Since the hair loss I have only washed my hair twice a week and make sure I have no tight pony tails or clips. I am about to reach 6 months next week and I am down to 5 mg of tacrolimus instead of 9 mg which I was in May. I have been using Rogaine 5% (never thought I'd buy this) and just not using any products or blow dry for now. When it first happens it takes several weeks to accept it is happening and can be traumatizing. I am super healthy as well and had a preemptive transplant which is like winning the lottery in the world of kidney failure. Of course I know how lucky I am and that a real problem is kidney rejection of a virus but that doesn't mean I don't care about my hair too. Over the last 2 months I have started to make peace with the fact that transplant comes with side effects we will NEVER WANT (due to the powerful anti rejection meds) and that this is part of the deal. Though I am afraid to say this out loud (to not jinx it)....My hair loss 'appears' a little less drastic in the past 2 weeks (month 4 was the worst for me). Every day I do the one brush stroke on my bathroom floor and when I see less hair dropping it is a sign of hope. I am also looking forward to making it through this intense post transplant protocol and my first year. By the way, I've never been a sound sleeper at all but for sure it is worse post transplant due to the meds. That's another side effect ;) We are normal for transplanted patients so the issue is acceptance that we have a new normal and that takes time to adjust to mentally. 

  • I have been on Prograf my last 3 kidney transplants and my hair didn't fall out and when I was on cyclosporine it made my hair thicker so I hope this helps
    • That's amazing that you survived 3 transplants. Also that prograf did not affect you hair wise.I love reading medical journals and NIH reports which say it is more severe in females (which does not seem fair :) I am 5 months post transplant and the hair loss has been dramatic since middle of May. I was offered cyclosporine , even had it delivered to me to change due to my distress but I have been afraid to switch due to my kidney function is doing well on prograf and I am afraid to mess with change right now. I am still struggling with this decision every week to change or not to change. 

      • Sorry about the comment I put on about the last 3 kidney transplants the was when I was taking Prograf
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