So, I’m one month in and my hair is coming out at what is an alarming rate for me. The doctors did not lower the amount of prograft at the one month mark. The hospital pharmacist told me to take Biotin, but did not say how much to take.
If you take Biotin, how much do you take? How many times a day? Most importantly, does it work?
Hi, hair loss is very upsetting, I started at about 10 months. Please check with your nephrologist on the biotin. Some doctors don't recommend added supplements. I take vitamins with 25percent biotine. Sometimes you get drug interactions, so check with your team before you try anything. My hair loss seems to be slowing down some as I'm reaching my 2 year post transplant this June. Also try thickening shampoos to hide the thinning. Good luck with everything, it truely is a new life.
Hi. I'm at 6 years post transplant. My hair loss started at 6 months. I would say I have lost about 1/2 of my hair. NOTHING helped. To this day, I have gotten in with an amazing group of women who are in pretty much the same spot. We are all wig wearers and loving it. A lot of them are very amazing and you just cannot tell. Love being able to change up all the styles. I got into it and just go with the flow now!!
Always check with your transplant team before starting any OTC treatment. Hair loss is a common side effect of our immunosuppressant medication. Your transplant team may have some other treatment that is safe for you - a treatment that they have tried and is AOK. Always check with your team first!
My team did tell me to take it. Just wanted to know how much others were taking.
Go with the wigs. My hair started thinning out several years ago and I've used wigs for a few years while I worked. I liked being able to use a hairstyle that I always wanted and never could accomplish. Good luck. BS Biotin never worked for me.
Has it worked for anyone?
I think it’s true that it only works if you have a deficiency?. But I do think that the placebo effect of taking it makes me feel better ? And ( most importantly) my team said it’s ok.
As far as I can work out from reading all the responses to the question of hair thinning is that you get what you get. Everyone responds in a different way.
It’s how to live with what you get it that is the issue ? My hair was really thick now it’s not it’s fine and weird and I hate it , I hate looking in the mirror now but nothing I can do about it
My skin is also like paper ... the list of things I think the meds have changed in me currently appears long . I live in hope that after 18 months things might settle down soon. I do think for me it’s still early days.
All you can do is keep on keeping on. Talk to your team at hospital regularly, communicate your fears, run your health like a small business, monitor yourself without becoming obsessional and live your best life.
I think what we endure is very tough at times but genuinely believe it makes us stronger happier people ? What does anyone else think out there ?
I had that same issue about 5 months after transplant, I tried Biotin and it didn’t work for me either, my hairdresser told me to start using L’Oréal “Ever Strong” sulfate-free thickening shampoo and conditioner, amazingly the hair shedding decease and my hair started thickening up and growing back. I am very pleased with the results.
Thanks! I’ll try it.
I usually get it from Walmart or Target, I pray it works for you too.
I had the same issue about 3 months after my transplant, including shaky hands from the prograf. I had extremely stable kidney function, so my transplant team asked if I wanted to try sirolimus instead of prograf. I switched (had to go in for more frequent blood draws to be sure everything was going ok) and the hair loss stopped and all my hair came back. Of course there are other side effects to consider with sirolimus, but I have been generally happy on it for 8 years.
I have shaky hands that started 5 years ago. It is very frustrating. I am taking, prednisone and mycophenolate for the kidney transplant. Any solutions?
How about Rogain? Anyone use it for hair loss because of prograf? Did it work?
Prednisone side effects, what did you do?
going to be evaluated at another transplant center 
Set up for Transplant Evaluations at various centers...
Trying to move forward.
