Preventing hair loss post transplant - Kidney Transplant

Kidney Transplant

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Preventing hair loss post transplant

Amyb93
Amyb93

Hi everyone!

I’m one month post kidney transplant and everything is going really well!

In the past, i’ve suffered from major hair loss do to stress regarding my CKD and intense hospitalizations. I had lost half of my hair in thickness. Fortunately, it grew back twice as thick within a year and a half.

Ever since covid started, i’ve been stressed out more that usual and my health on dialysis was a little rocky a few months before transplant so i’ve notice that my hair has been falling out more (again). I knwo thay meds, recovery and surgurey can make you loose your hair more too, especially a few month after. However, since transplant the hair loss has gone down! My transplant pharmacist suggested that i start biotine to help renforce my hair and to promote new growth.

My question is: what have you tried and worked to promote new growth? I’m willing to try pretty much anything that is safe more me and my new kidney friend!

Thank you so much!

Amy

27 Replies
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Dear Amy93,

This may, very well, NOT be the answer that you were 'After' but.... Can you Try NOT WORRYING about a 'Little' hair loss? You are clearly Recovering Well from your Transplant- Congratulations, by the way. I assume that you 'Blood Results' are good, you clearly feel better, you also No Longer have to have Dialysis.... and Your Fretting about losing some HAIR! (I AM aware that femails tend to be more concerned than males, about baldness, and I fully understand, that this IS a worry to you.)

Suppose you 'Showed Off', your Bald Patch- with Pride- telling anyone, who askes, what a Lucky/ Fortunate Girl you have been. Not your 'Style'? Well, at least, don't concern yourself, regarding what 'others' think. Everyone Else, is too 'Tied Up' in their own thoughts, to even Notice you.... think, what was the Young Man- the one standing behind the shopping trolley, WEARING? Come to think of it... what was Anybody wearing....... Do you take my point Amy?

You just Concern Yourself, with your OWN Recovery, and, quite frankly, 'Blow' what anyone else thinks- You are a Lovely girl, even without hair!

Sending you Very best Wishes, from us All.

AndrewT

LisaSnow
LisaSnow in reply to AndrewT

It wouldn't be normal for women to feel FINE about losing hair. Let her feel free to express her concerns and ask her questions please Andrew. THANK YOU.

AndrewT
AndrewT in reply to LisaSnow

Dear Lisa,

Perhaps, my Post WAS a bit 'Harsh', and YES maybe I DID 'Prattle On' a bit. I was just trying to, however badly, make put the Hair Loss into an Overall Context. I can assure you, that I meant No Offence, to Amy, or indeed yourself.

Clearly, if she is unhappy, she should Talk to/ Consult her Doctors- this is the Normal procedure. I went on to say how 'Oblivious', most people are, to Others. I intended this as a Re-assurance and not, in any way, as an insult.

I hope that this has set, my 'Fumble Headed' intentions, right Lisa.

Oce again, sorry for the Offence.

AndrewT

LisaSnow
LisaSnow in reply to AndrewT

Thank you Andrew.

Hi Amy, Biotin supplement indeed can help but the hair cycle will take place first. So if you don't see results right away just be patient. Many people on here swear by biotin shampoo too but personally I don't think shampoo is that effective because I rinse it out quickly. Just be gentle with yourself and try out lovely styles of hats. Enjoy the fabulous fashion while your hair renews to a better self!

Amyb93
Amyb93 in reply to LisaSnow

Thank you! I will give that i try :)

-8754
-8754 in reply to Amyb93

Any, your just like the rest of us who have received a transplant. Meaning, you have survived CKD and Dialysis like the rest of us and grabbed to “Golden” ticket, Kidney Transplant! This means you can handle anything thrown at you from now on. Go easy on yourself, give yourself some time to adjust and take it all in. I am 16 months post transplant and the one thing I know is, you will feel differently at 6 months PT, a year at PT and so on. Take it from a transplanted bald guy, you will survive your temporary hair growth disruption. Let us know when your hair grows back as I know it will!

My hair thinned out after my transplant. It was thick and curly. It grew back straight and healthy. The dermatologist that was called in told me it was from stress. Some meds can cause hair damage in my system, like atenolol and imuran. Sounds like if you work on your stress, you should be fine. Some ideas are walking, yoga, accupuncture or talk therapy. Sometimes, biotin helps with hair issues.

WYOAnne
WYOAnneNKF Ambassador

I thought I was losing my hair after my transplant, but after several months port transplant it was just the opposite. I had been so sick before, that my hair was very thin and straight. At first it seemed after my transplant that I was losing my hair...what was really happening, I was getting new hair and the old was actually falling out. My hair came back thick and somewhat curly. Mine came back naturally after several months.

You should give it more time, but if hair loss seems to be a problem first talk with the transplant team. Could be related to your immunosuppressants. My second choice would be to see a dermatologist

Best of luck. I am almost 21 years post transplant and continue to have thick hair.

Amyb93
Amyb93 in reply to WYOAnne

Wow thank you!! Will talk to my transpkant team !

Hi all,

I am going through the same issue of severe hair loss. I am 3.5 months post Kidney Transplant. All other things are normalized and under control except this hair loss. I am scared to brush daily as the floor turns black from the shedded hair. Shampooing is worse. I had thick long hair( till waist) all was well first 2 months after Transplant. Then the nightmare started. I cut my hair short till shoulder but it keeps shedding.

I take B12 and Biotin as suggested by Transplant coordinator. Its not helping!

I am on Tacro - 4mg, Imuran and Prednisone 5mg.

I see my Neph in two days and a Dermatologist after that.

Does this stop after sometime? Will it grow back or will I start having bald spots?

Let me know what you find out. I'm having the same problem. I had my transplant in April.

Alfredmynewkidney Doc did recommend to see a Dermatologist. I have appointment next week. She said its the Tacrolimus causing the loss. She wanted to reduce the dose a bit on it while increasing dose of Imuran. But Higher doses of Imuran causes my blood counts to drop. Its double edged sword. Can’t decide which side to choose

Amyb93
Amyb93 in reply to parojulie123

Hi, if you don’t mind me asking, what is your dose of tracolimus? Mine is 1,5 mg twice a day.

parojulie123
parojulie123 in reply to Amyb93

I am on 4mg once a day. That keeps the tacrolimus level in blood within range what docs prefer- 5 to 7

Amyb93
Amyb93 in reply to parojulie123

My docs want me between 8-10, but i’ve only had my kidney transplant July 28th so it’s still very fresh! I’ll be asking them about hair loss/dermatologist/tacro for sure! Thanks for the advice!

parojulie123
parojulie123 in reply to Amyb93

Amyb93 initially the levels need to be high but then they like it to be lower. I think 5-15 is the tolerance range. However depending on body weight, the ‘happy’ level vary. Too high level tend to affect the kidney adversely. I had tac level as high as 14 one week and my creatinine started rising.

LisaSnow
LisaSnow in reply to Amyb93

What other immunosuppressive meds are you on?

Amyb93
Amyb93 in reply to LisaSnow

I’m also on cellcept 750 mg twice a day and prednisone 6mg once a day.

LisaSnow
LisaSnow in reply to Amyb93

Good combo!

LisaSnow
LisaSnow in reply to Amyb93

My range for tac within the first year was 8 to 12. Every time it dropped they freaked out and increased my med dose. I think your trough level expectation is on the lower side compared to our standard.

Amyb93
Amyb93 in reply to LisaSnow

Maybe it depends on transplant center 🤷🏼‍♀️i live in Canada so it could also different from one country to an other !

LisaSnow
LisaSnow in reply to Amyb93

Most definitely. Each center and country follow their own protocol.

I saw a Dermatologist for hair loss. She recommended two meds. Either one can be used. Available on Amazon - Nutrafol and Visiscal. The temporary hair loss we are experiencing is called ‘Telogen Effluvium’

But when I checked with my Transplant team, the pharmacist did not recommend taking above meds. They have some herbs which could react with the anti rejection drugs.

So I am back to square one - no solution

I continue to take B12, Biotin and zinc sulphate as supplements to help hair. Bought Rogaine 5% and will start using

Amyb93
Amyb93 in reply to parojulie123

Hi! I had found Natrufol on my own and asked my pharmacist and she said no too.. due to some natural product that interferes with tacro. Let me know how rogaine works!

parojulie123
parojulie123 in reply to Amyb93

I read a bit about Rogaine. It apparently works on people who have hereditary around hair fall and baldness. None of that is my case

Rogaine does work. The active ingredients prevent hair loss and encourage growth by increasing local blood flow. Basically it promotes cellular activation that signals to the hair follicles to "stay in growth cycle". It has worked well for me. I use the 5% version.

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