Should I anticipate Hair Loss

[chopsuey]

Hi guys,

I'm 6 weeks post transplant, and I am currently on 9mg advagraf once a day. I experienced a lot of hair loss in the last year of dialysis when I had to switch to Hemo after a bad case of peritonitis. My hair started to grow back in towards he end of dialysis but now with my transplant should I anticipate hair loss again. I've been reading and it seems the hair loss comes on after a couple of months on the immunosuppressants. This really depresses me because my hair was my favourite feature...

Please let me know what I can expect in the coming months.

[KatieV]

It depends on the immunosuppressant.  Cyclosporine, for instance, is known to cause women to grow a mustache.  I don't recognize that medication, but it's name is similar to Prograf.  Is it Tacrolimus?  If so, yes it causes hair loss.  I am 2 months post transplant and have lost quite a bit of hair.  It is annoying, but I've got a whole lot of side effects that are a lot worse!

I recently read an article where they mentioned using Mane and Tail, a horse shampoo, to increase hair thickness after transplant.  I haven't done any more research into it, but maybe it'll help.

[chopsuey]

Yes it's basically extended release tacrolimus that you take once a day. Did your hair loss happen immediately after the surgery?   Because I haven't reLly noticed hair loss specifically, but I have definetely noticed brittle nails esp on the side of my fistula.

Thanks for the reply!

[justme15]

i took prograf/tacrolimus when i had  my transplant and I didnt have any hair loss! in fact my hair grew quite well.  I didn't start experiencing hair loss/lack of growth until I started dialysis. 

[KatieV]

The hair loss did start soon after transplant, but I am super sensitive to meds it seems.  I would say I've probably lost 1/3 to 1/2 of my volume of hair.  Thankfully I had very thick hair to start with.  It makes my husband sad - he liked my thick hair.

[jeannea]

My hair loss is more like a dog shedding. My chair gets a lot of hair and my coats. But in the end I still have plenty left. Be kind to your hair not overstyling every day or perming all the time esp if you think your hair loss is too much. My hair is best if I wash it every other day and I have an easy care style. I can blow dry it or not and I don't use a curling iron. Of course I couldn't use a curling iron anyway because my hand tremor is too bad.

Prograf can cause hair loss but so can Prednisone. Prednisone makes you more like a man's hair growth. You grow hair everywhere except the top of your head.

You'll be ok. You'll find out what works for you.

[coravh]

There is good and bad news. Yup, you are probably going to lose some hair. Many of us grow it back though. I had "tree rings" in my hair for a long time. Over the course of a couple of years I had a series if issues, and lost hair. So as it grew back, it also grew back in stages, so I had layers. Not nice, styled layers either. But eventually I got my old "happy" hair back.

[jbeany]

4 years out, on Tacro and Prednisone, mine isn't as thick as it was pre-transplant, but it's not bad.  (I went nearly bald after the transplant, but that was due to massive complications and 4 months without eating on top of the usual meds.) I had thick hair to start with, so now it's just kind of normal.  You should see an improvement after a few months - don't forget that surgery and the stress that goes with it also leads to hair loss, but that loss will recover.

[MooseMom]

My hair loss started about 6 months after tx and continues a year later.  Like others have said, it's due to the tacrolimus.  My tx team assured me that it is temporary and that they have never seen a patient who lost so much hair that there were bald spots.

I had a lot of hair to begin with, so I don't really think my hair loss is noticeable to people who don't know me, but I notice it as it is hard to NOT notice it when you've lost a third of your hair!

My tx coordinator and my dermatologist recommended such things as rogaine, Nioxin products and vitamin B12 supplements.  Nothing worked.  If you read the patients' information leaflet that comes with Rogaine, you will see that it is not indicated for people who are losing their hair due to medications.  My husband bought it for me without looking at the label, but I would not have bought it for myself.  Rogaine is for people who are losing their hair for "normal" reasons, like typical male pattern baldness.

Nioxin products irritated my scalp something awful.  It was downright painful, so I threw it all out.  An expensive mistake.  But perhaps it could help you.

My tx neph did say that if I was really bothered by the hair loss, she could substitute cyclosporine for the tac.  I took cyclosporine in the past for several years when I was pre-D, and I tolerated it well.  I didn't grow a mustache!  But then I read a post from someone on another Transplant Patient support group website who switched from tac to cyclosporine because her hair loss bothered her so, and she ended up with a rejection episode, so I'm not going to faff around with my meds.

I handle my hair as little as possible.  I do not use heat on it.  I am just hoping that eating healthily and getting plenty of rest and exercise will help in the long run.

Before I got my tx, I admit to being annoyed with people who had a new kidney but were moaning about something as trivial as hair loss.  Why can't you be happy with your good luck?  But now that it is happening to me, I had to wonder if I was more vain than I had realized.  But in thinking more about it, I came to understand that the hair loss is, for me, a constant visual (and therefore inescapable) reminder of the fragility of my health and of what has happened to me.  In my mind, the hair loss is more about fear than it is about vanity.

[cattlekid]

I didn't have a lot of hair to begin with and tacro took about 1/3 of what hair I did have.  I just saw pictures yesterday of what I looked like three months post-transplant and it was pretty bad.  Lots of hair loss at the temples and at the part in my hair. 

I have since given up the shoulder-length hair and gone to chin-length.  It's helped mask the hair loss somewhat.  I asked my stylist if I needed to go Miley Cyrus short and she said "not yet". 

Transplant NP said the hair loss will mitigate over time.  FWIW, I am on 8 mg of tacro per day.

[Iona]

Hi Chopsuey. It's difficult to predict what you can expect as we're all so different. I was on tacrolimus (but prograf variety). I had no hair loss. My hair remained pretty thick.

When I was on cyclosporin, before tac, my hair became thick..and my eyebrows even thicker.
My family thought it was hilarious to present me with tweezers over a foot long as a subtle hint that my brows needed some attention. This was at my anniversary party to celebrate one year of healthy transplant! I took the hint gracefully and started some serious topiary!

Hope advograf works out well for you...losing hair is no fun.