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I can't bring this up to anyone else because as a transplant patient, especially one as fortunate as I have been to receive a pre-emptive transplant from a nearly perfect match living donor (someone I didn't know but who had met me/known about my need due to the type of job I have). I do feel very fortunate that everything so far has been going well, my labs are good, I've been back to work full-time for 2.5 months and while I'm still very tired at the end of the day, I no longer have the symptoms that come from having a GFR of 9.

I take 2 myfortic 325mg twice a day and 4mg tacrolimus in the am, 4mg in the pm. My tacro level stays just above 5.2, exactly where they say they want it. My center doesn't use steroids.

Anyway, about 5 weeks ago, I suddenly noticed a lot of hair in the shower. I've always had very thick, curly hair my entire life, even at 50, so it wasn't necessarily that unusual to have hair falling out in the shower, but it just seemed different because I also noticed it didn't feel as thick. In the last 2 weeks, it's very noticeable that my hair is thinning, right at my part and my once thick bangs are wispy and thin. It's causing me tremendous distress because I'm already very self conscious about how my once slim body has an obvious pooch because my donor kidney is very large for my frame, but to lose my hair as a woman is very distressing. I work in a field where my appearance is important. Plus I've always been very critical of my own looks, it's a terrible combination but not something I've been able to overcome.

I'm so sad about my hair loss and terrified it is going to continue until there's none left. With permission, I've been taking 5000mc of biotin every day and folic acid. My nails look better than ever, but it seems to have no affect on my hair. I don't know what to do and like I said, I can't really talk to anyone because they will think I'm being ungrateful and that I should just be happy to be alive. I am grateful and happy to be alive but I'm also a middle-aged woman who doesn't want to be balding. 

 

Has anyone my age gone through this and honestly, did your hair ever come back, or is this just going to be permanent as long as I take the tacro? I'd imagine that all immunosuppressants cause this? No one prepared me for this side effect before the transplant. I feel like if I'd known, I could have prepared somehow or something. 

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Replies

  • Sorry to hear about the hair loss. I was transplanted three years ago and lost a lot of hair due to the impact of the surgery on the body and then the immunosuppressants thereafter. I have been taking 5,000mcg of biotin and now my nails and hair have come back nicely. Still a little thin but that could just be old age :-)  Anyway I am happy with how it's come back so I wouldn't stress to much yet. Good Luck! John

  • Thank you all for your supportive words and encouragement - it made me feel a ton better. I also went to a new hair salon that only uses Aveda products and got a nice haircut the other day and my hair looks beautiful again (or at least much better). 

    The adjustment is difficult but I feel so much better and am so thankful I had this opportunity to enjoy my life again. :>) 

  • They say your hair can thin or thicken from the drugs.  My mother had a transplant and her hair was like a bush.  I had the same reaction you did and had similar hair.  But it was only bad in the time frame you are in.  I took and continue to take 5000 Biotin and all I can say is my hair stabilized. I would say it’s not as thick but no one else will!  I am 64 and two years from transplant and take no steroids.

    You have every right to be upset by your hair.  We are all human and this process we all are in can be traumatic enough.  Wishing you the same results I had.

     

  •  Medication side effects(could be). But, stress will make hair loss worse. .  Rogaine over the counter will help grow hair but when you stop using hair may fall out. I used it and it did work. Don't worry use hair bands etc. Scarves. 

  • Biotin 5K mcg daily and time for me.

    Also lower doses of Immuno meds as time progressed and I needed less to stay at appropriate levels.

    And you are still allowed to not be happy about everything, it is a process.  

  • In answer to your last question, my hair grew faster and thicker after I lost my first Tx and ceased taking Prograf (tacrolimus.) This was short-lived though, as I received a 2nd kidney Tx and started tacrolimus again. This unfortunate side effect IS a "party-favor," for those who must take it. You should speak to your Tx team to gather more information about a successful treatment that is good for you

    In our archives, you can read replies from members, who have found success in taking a Biotin supplement and using Keratin-based hair products. I know you are grateful to be alive, but you owe it to yourself and your donor to make this life, as good as it can be! Good Luck.

  • Ask your tranplant team if you can also take CoQ10 along with the Biotin.  That combo really helped my hair.

  • Hi, yes, I also have always had thick wavy hair.  About 7 months after transplant I also noticed that I was losing a lot of hair.  This lasted for a few months, and it was a bit depressing.  Fortunately, I’m retired so appearance is not as important.  Now, a year later, it is pretty much back to the way it was, although the texture has changed some, and it is curlier.  It was also quite a bit drier (I also live in the desert), and I have some good Aveda conditioner that helps a lot, and now I don’t often use any heat or even blow dry.   

  • I had always enjoyed having long thick hair, but after the transplant and my long stay recovering in the hospital from the surgery, my hair was in such bad shape that I decided to cut most of it off. Like Cora, it was also hard for me to do this as my hair had become part of my identity in a sense (I remember in college someone identifying me from high school as that person with the long hair). However, with time, it has come to grow as it once did, and I have had my hair grow out as far down as my waist. It did take some time though to regain its thickness and produce its natural oils, but the one who cut my hair said she could see small improvements each time she worked on my hair. I hope that your hair will also do the same.  I send you a colossally enormous hug. 

    Warm regards,
    Bobbiejo

     

    • Nice to see you Bobbiejo. Amazing how we get wrapped up in our hair, isn't it?

       

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