Ok, So my "Kidneyverssary" was this past January. I am 5 years out and I have been on Prograf and have to be on valcyte for life. I used to have thick spiral curls. Now I have very fine thinning curls. I am doing the Rogaine for women again ( I was on it and stopped thinking it did not make a big difference) wrong! My hair fell out even more, in big clumps and it is still going. I want to get my hair back. I was first put on Rapamune, but I got sores in my mouth within 2 months of transplant. Can't be on Steriods. Transplant was living donor, 5 point match but EBV mismatch. I am also on Myfortic. Is there any other medication I can suggest to my doctor to switch from the Prograf?   Ladies, I am ready to get a curly pixie cut to "restart" my hair. Are the bald spots very noticeable in a short hair cut?

Tags: Hair, Losing, Mind!, My, and

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I am sorry that you are having such a problem with your hair. It was hard for me when I was losing hair before my transplant. Perhaps you could ask your doctor if taking a supplement of Biotin might help at all. I have heard that it is good for the hair. You may also want to look into getting a specialized shampoo and conditioner to see if that helps at all. I have been on Prograf since my transplant about six and a half, and my hair has grown back, but I am also not on many of the other medications you are on, and each person reactly uniquely to each medication. I hope that you and your doctor can work something out that makes this situation go better for you. Many hugs and best of wishes.

Oh Wow! Your response is so sweet!! For sure I will ask about the biotin and what the other meds are doing. I'm also 43 and I wonder if being postmenopausal is making things worse! Six years out for you? Congratulations! I'm also happy that your hair came back! Hooray! Hope you keep on feeling as good as you look! Thank you for thinking of me! Hugs!

I  had  hair loss at  4months  post  TX.

I  started  using   Nioxin  for  thinning   hair    products  (shampoo,  conditioner,  scalp  foam treatment  w/sunscreen  and   sometimes  a   gel).  Nioxin  foam   makes the  hair  look  thicker  too.

My  hair  is  looking very  nice,  not  very  long  yet, but  getting  there.

It used  to  be  straight  to wavy,  it  came  back  curly. 

It  makes it  look  fuller.

Take  care!!

Dear Marina,

You gave some great encouragement! I'm going to try the Nioxin Foam. Don't they only make that for men? Thanks for taking the time to help me, I am very grateful for anything I can get! LOL!

I went to the dermatologist about severe hair thinning starting at about seven months out and it is about ten months now. It looks as if all hair will eventually fall out but not at the same time. THe dermatologist told me to use the mens rogaine foam 5% and use brand only. I have a lot of hair that is two or three inches growing in since starting to use rogaine. The short parts are still too short to cut in to any kind of hairstyle so I wear a wig when I go out. I also take biotin and my dr. said it is okay. Going to be at least six months before I can do any kind of hairstyle. My lungs are doing great though. :)

Hey Sabrina, i'm almost 9 years into my tx & have 2 episodes of hair loss, the 2nd being the worst a couple of years into my tx.. i must have lost about a third of my hair... was so upsetting at the time as like you i was losing big handfuls of hair each day & i thought it would never stop ! eventually it did however as suddenly as it had started and my hair began to grow back ~ i have a centre parting & as the baby hair (as i called it !) grew back it would stand up & blow in the wind like a mohican which was pretty embarrasing ! my hair is much healthier now though and i get compliments from hair dressers on the condition it's in, they're always surprised when i tell them what it's been through ! I did find when i was going through it that giving it a good cut seemed to help it recover more quickly but not sure if perhaps it just felt like it did.. i really hope you manage to get help from your doctor, mine had told me there were options to change my meds but i was lucky that it stopped on it's own so not sure what they would have been (i am on Prograf too) ~ take care & don't let it get you down, sending lots of good wishes, Louise :o)

Dear Louise,

You are such an encouraging person...stay in touch! You know it is tough when you think you are over the worst and then bam! More! I went back to using Rogaine and the shedding has slowed down, though not stopped. I guess I'll see. But I LOVED your baby hair story! I hope that happens to me! Having curly hair I can't always tell what's new.LOL! I am seeing a hair dresser this week and I excited to see what we will come up with together!

Thanks again for everything!

Hey Sabrina,

Awwh, so happy to have helped & glad you liked the baby hair story ! :o) hehe ..i def agree, it's prob been one of the worst side effects after my tx & really knocked my confidence for a while the 2nd time it happened, my heart sank & i thought, no - not again !! I was lucky to have great support from my family, friends & work colleagues though & you just have to think how strong we've been to go through the transplant itself ~ i read your profile story & i think you have been incredibly brave, i'm so thankful that your brother was able to donate to you.. my dad donated his kidney to me & he's my no.1 hero, you def form a special bond & we celebrate our kidney anniversary's too !  Hope all goes well at the hair dressers ~ i'm sure you'll come up with something fabulous together, def keep in touch & let us know how you get on ! Hugs & smiles ~ Louise :-)  

Will Do! I'll try and post an after pic soon so you can see!LOL!

Hugs to you and your brave Dad!

Yay ! that would be fab ~ look forward to seeing the end result ! hehe :-D

Awwh thanks ~ big hugs back to you too from us :o)

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Suzanne Giacherio replied to Suzanne Giacherio's discussion Painful mouth tissues - not just thrush this time
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Suzanne Giacherio replied to Suzanne Giacherio's discussion Painful mouth tissues - not just thrush this time
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Dawn Chick replied to Suzanne Giacherio's discussion Painful mouth tissues - not just thrush this time
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Painful mouth tissues - not just thrush this time

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