Hair Loss Post Tx

[Cordelia]

Anyone have a problem with this?

I brush my hair after showering and there are clumps of hair in my brush. This happened when I first started dialysis. After awhile it got better and wasn't so bad.

I had my tx in early April and this has just started in the last two months or so so it wasn't like it started right after my tx.           

What's the cause? I'm assuming its the Prednisone?  I'm only on 5 mg and I would have thought if the prednisone causes this, why didn't it happen sooner when I was on a much higher dose months ago?

Hair goes all over my bathroom floor from it too (my hair is only medium length)

I used to get teased so bad when I was on dialysis.       

I don't show any signs of hair thinning or balding so that is good, just wondering what I'm in for.           

How long could this last for, will it get worse? Better?

The hair loss when I was on D was bad for the first 6 months and then I no longer had problems.

Thanks for any help!           

[MooseMom]

Yes, hair thinning is common after tx and is due, I'm told by my team, to prograf/tacrolimus.  Mine started falling out months after my tx, much as what you are experiencing.

I spoke to my coordinator and my dermatologist, and I was told to take vitamin B12, biotin, and to use Nioxin products.

Bah to them all.  Nothing helped.  And Nioxin burned my scalp something awful.  Oh, and my coordinator told me to use Rogaine.  Don't bother because if you read the info, it says that Rogaine is useful ONLY for people who have thinning hair due to pattern baldness.  In other words, it's not useful for people who have thinning hair due to meds or something like chemotherapy.

My tx team assured me that the thinning would not continue forever and that they had never seen anyone develop actual bald spots.  I'm skeptical.

The only thing that helped me was a reduction of my tac dose.  It seems to be standard protocol at my center to keep the tac level at between 8 and 10 for the first year and then reduce it to between 6 and 8 thereafter.  My hair loss almost completely stopped, but now, about 5 months later, it seems to be picking up again although not as bad as before.

In saying all of this, though, maybe B12, biotin, Rogaine and/or Nioxin will help you.  Those things just didn't help me, and I ended up wasting a lot of money.  I suspect that this is such a common problem that tx centers have their stock answers which MAY work for some but probably not for most.

Let me know if you find something that helps.  But your hair loss is very common, I assure you.

[cattlekid]

I'm with MooseMom.  Six months post-transplant, they keep increasing my tac dose to keep me in the 6-8 range.  I'm now up to 4 mg twice a day.  My shoulder length hair was falling out in small handfuls on a daily basis, I shed everywhere.

I finally gave up and cut my hair to right above chin length.  At least now, the hair loss is not as noticeable.  It hasn't really seem to let up though.

[jeannea]

I shed all the time. I think it's a combo of Prograf and Prednisone side effects. I keep my hair just below my ears and it's harder to tell. Luckily I started with thick hair so some loss is ok. Do you color it or perm it? When you combine that with transplant meds you can lose a lot of hair.  This is a tough side effect because of vanity but at least it doesn't hurt or affect the life of your transplant. Eventually you'll barely notice.

[MooseMom]

The hair loss is really annoying; it's just so damn messy.  I'd find strands of hair everywhere...the dishwasher, the refrigerator.  I've always had such a lot of hair, so I have to admit that I kind of welcome a reduction in the sheer amount of it.  Like others have done, I got a haircut, and that helped it look generally better.  My hairdresser said that she didn't notice any severe hair loss, and I know she's telling me the truth.  She has said, though, that my hair seems "fuzzier"; it has always been naturally curly and would frizz at the mere mention of the word, but it DOES seem fuzzier.  But that could be med related or could even been age.  LOL!

My hair loss came close after the morning I awoke, looked in the mirror and realized that overnight, my eyes had gone puffy!  OVERNIGHT!!  I knew that was the pred, and I can't do anything about it, so I wear a little extra mascara to make it less noticeable.  Actually, it was my bloaty eyes that my hairdresser noticed first, not my hair.

I don't know if it's a matter of vanity, rather, I think it's more a physical, constant reminder that our lives are precarious because of kidney failure.  When overnight the face you are used to seeing suddenly has changed, it's as if Fate is yelling a reminder to you that you are living on the edge of the precipice. 

I handle my hair as little as possible.  I do not blow dry it.  I wash it every three days, and I use a leave-in anti-frizz conditioning cream.  I let it dry on its own and then finger comb it.

I console myself with the fact that no one else has noticed, and no one else really cares.  People have their own lives to lead and don't make my hair their priority.  LOL!

[Ninanna]

I notice anytime I change my diet significantly my hair starts to fall out.

[Cordelia]

You're right, everyone, it's just so darned messy!

Actually, my hair isn't as long as I described. It's about 2 inches below my chin. I haven't had it really long for quite awhile. I don't color or perm it ever. Haven't had a coloring done since before dialysis, so that's been probably well over 4 years.    I can barely even put it in a pony really, its not very long.

I wash my hair everyday and blow dry it only occassionaly, if I need to go outside right away.

Do you think washing it everyday is too much perhaps? I brush it out when its wet. I wouldn't be able to wait til it has air dried or it would be all tangled by the time I run a brush through it.

I'm only on Vit D. I have asked about my vitamin B levels and just had a blood test to find out those results.  I'm not even on a multi vitamin, which I wonder if I should be. Doctor hasn't pushed about that. I will likely ask again when I see him in Dec.

I agree that its a continuous reminder of our renal disease. It's not a vanity thing for me either because I have lots of hair and its not thinning at all. And, I don't have bald spots, but I think you're right, its the constant reminder.       

Yes! LOL! Shedding is the right word! LOL!            That's  a great way to describe it! LOL!               I can relate, there's hair everywhere, in places that you don't want hair, in the fridge, etc. LOL!      I wonder with all the shedding its a wonder I don't look bald! LOL!

Thanks for all your advice.           

I do know that likely the only way to curb the problem is to get it cut short and I don't want short hair at all!         

[MooseMom]

You might want to consider washing your hair less; could you go maybe every other day?

It sounds like my hair is about the same length as yours, maybe half an inch shorter.  I would never get really short hair, so I think this length is probably about right for the both of us.  I don't think you need to cut your hair really short, do you?  It's probably more important to keep it well groomed with a really fantastic cut that suits your face and lifestyle.  When I went to my hairdresser (who I've been going to for years), I said that I was just at a loss as to what to do.  She said, "Don't worry, I'll make you look good."  And she did.  Find a really good hairdresser, describe the problem and let him/her work magic.  An experience hairdresser has certainly seen this type of problem before and would know what to do.

I would suggest using a detangler and then comb it out when wet, not brush it out. 

My tx neph put me on a daily multivitamin.  I was using some OTC vitamin for women, but then I switched over to USANA and take a multivitamin and a multi-mineral.  It's pricier than the stuff you buy at Walgreen's but I think I get more bang for my buck.  USANA is used by many players on the women's tennis tour, so I figured it was good enough for me.  But yes, I would ask your neph about using a multivitamin.

It does get better. 

[jeannea]

I only wash my hair every other day unless I need to be at a special occasion. If you need a detangling spray, Pantene makes a conditioner spray that works great and isn't in the kids area. I do take a multivitamin One A Day Essentials. Definitely ask your doc. It might help but you'll still shed. My mother complains that after I visit she has to vacuum the recliner I usually sit in.

[kateb84]

Hi All,

I'm not glad others are experiencing this, but guess i am glad i am not the only one. I am 29 and received my 2nd transplant in July of this year. I didn't notice the hair loss at first but over the past month or so, it seems to be increasing. I also had very thick curly hair and just noticing hair everywhere in my house and of course, the handfuls coming out in the shower.
I have resorted to washing my hair every other day. I remember when i was in High School and on cyclosporin, the hairloss was quite noticeable, especially when i had it in a ponytail but eventually it got better, i don't remember when, but i did cut my hair all off at that time too, so who knows.

Might just mean cutting the curls off for a bit until it lets up. I have a call in to my transplant Pharmacist to see what they say, but i can assume they will reccommend the same vitamins as mentioned above.

[Sax-O-Trix]

I am having the opposite problem.,,  I could probably grow a beard, definitely a full mustache, and the  hair on my arms now extends all the way up to my shoulders. My hair dresser complains about how much hair I have and I have to shave my face everyday. It's disgusting and humiliating.  I have shorter hair to begin with and still have to have it thinned out when I get it cut.  My post transplant meds are Cyclosporine/Cellcept/5 mg Prednisone.  One of those three drugs is the culprit.  I woke up one morning a couple of months after my transplant and realized my entire face was covered in fuzz, I even had this hair-fuzz on my nose!  Ugh.

[jeannea]

Oh the cyclosporine memories. I took this for a year after my first transplant. I am a woman and I grew hair everywhere. The amount on my face was awful for a woman. I was in a dressing room with my mom and she told me my back was fuzzy. Not a compliment. The difference between growing hair and losing hair is cyclosporine vs prograf.

[coravh]

For a while between dialysis and transplant and other issues, my head/hair looked like tree rings. As it grew in, there were layers as I had lost it in waves. The good news is that your hair will most likely grow back. Mine did and even though I am on the same drugs I always was, it is now as thick as it used to be. Any trauma to your body (surgery, dialysis, drugs, etc) can trigger your hair to fall out. I know it's a pain. I love my hair and had to cut it because it looked like crap. It made me cry. But things are better now and I hope they will be for you. You stand a good chance of things returning to normal or at least close.

[MooseMom]

It's nice to read your encouraging post, coravh!

[coravh]

It's nice to read your encouraging post, coravh!

Thanks so much. I don't post here so much, but I try to be positive. I've had a rough ride, but with support from family and friends and folks on a variety of boards, I am now doing quite well.

[Cordelia]

Thanks everyone for your encouraging words!           

I have been trying to wash my hair less , every other day and it might be helping some,  this morning while sweeping my bathroom floor I think I noticed less hair on the floor! LOL  thank you so much everyone!                     

It's weird, I don't have thinning hair and it doesn't look patchy at all.... which is good, but I could also, like some of you, make do with less facial hair. I had a problem with that previous to my tx and its gotten worse on the prednisone. I figured it would and so far that's been the case.       

Thank you also for your really encouraging words, coravh.               I know I have to look at the bigger picture sometimes when the smaller things really get to me and remember I'm not tied and tethered to a machine anymore, for that I'm very thankfor for     

[brandywine]

I am 2 months short of 2 years post transplant. I have gone through two phases of losing 60-70% of my hair, frustrating because I felt like it was the one feature I had going for me. This last time, I didn't even have enough to put extensions in to "cover it up". It would seem that the culprit was Cellcept. I was taking 1000mg twice a day, and now I take 500mg twice a day. My hair is finally growing back. I attached a pic so you could see how bad it got.

[MooseMom]

brandywine, I'm glad to hear that your hair is growing back.  It must have been so distressing for you to experience TWO bouts of major hair loss.  I'm sure the culprit is indeed Cellcept.  I take Prograf, and I have experienced hair loss, though not to that extent.  Both of these drugs are notorious for this!

Be sure to post an "after" photo, OK!  You've got beautiful hair, so it's great that it's returning.

[Cordelia]

Hi Brandy, thank you so much for sharing your pics with us!  I am so glad also for you that it is growing back!

I did not realize that hair loss has been linked to the Cellcept. I'm on it also. I was on 1000 mg in the morning and 1000 mg at night also in the beginning when I had my transplant last April.  In November I was backed off to 750 mg in the morning and 500 mg at night due to that my white cell count dropped drastically last fall. It has never been increased back to the original dose it was last fall.

I also have been wondering if coloring hair damages our hair at all, I haven't tried that yet but I am leery about it.

[coravh]

Hi everyone. Just a quick update. I went to the hairdresser yesterday. She has seen my hair at my worst. I was on dialysis in '01/02, tx in 02, pancreas transplant in 08, and all sorts of other things. I've been on transplant meds for almost a decade. And yesterday my hairdresser said my hair was the best she's ever seen it. It's thick, looks healthy,  and is a pleasure for her to deal with. So yes, you can get your hair back. It might not get all the way back, although mine did. And it may take some time. But there is hope.

[cattlekid]

Mine is coming back too.  My hairdresser noticed it this past weekend and I am one year post transplant. 

[Cordelia]

That's awesome to hear for you both!              

[Sugarlump]

Heparin or heparin substitutes cause significant hair loss on dialysis.
Post transplant drugs have the same effect, particularly cellcept and prednisolone.
In my experience it takes 6 months for the hair to recover fully and start to grow normally again.
(Apparently drugs stay in hair follicles for a very long time - up to 60 days in a 1 inch sample strand!!!!!)

[Cordelia]

Heparin or heparin substitutes cause significant hair loss on dialysis.
Post transplant drugs have the same effect, particularly cellcept and prednisolone.
In my experience it takes 6 months for the hair to recover fully and start to grow normally again.
(Apparently drugs stay in hair follicles for a very long time - up to 60 days in a 1 inch sample strand!!!!!)

I had problems for a long time when I was on dialysis too. The first 6 months was the worst for hair loss. My hair was falling out in chunks when I was admitted for my stage 5 renal failure. There were clumps of it I saw on the tile floor near m hospital bed, I remember it really freaked me out at the time because I didn't understand the link to dialysis.       

[lainiepop]

Hi everyone, I'm almost 2 years post tx and to start with i had no hair issues on tac, cellcept and pred. Then i was taken off the pred and switched from cellcept to azathioprine (the cellcept gave me nausea and diarreah) and my hair went so limp and thin. After about 7 mths it strted getting better and now my hair pretty long and thick like it used to be. Not as wavy tho lol. My hairdresser commented last time it had thickened. So maybe sometimes its a case of the body etting used to the drug changes?!