It's official, post transplant medications have fried my hair!

[kellyt]

Directly after transplant my hair was falling out by the handfulls.  Lucky for me I have a lot of hair (thick).  Now that we've began to cut back on those meds a tad it has stopped falling out  , but now there are two other problems.  1)  the new hair growing in is causing mega friz because of the difference in length AND 2)  chunks of my once curly hair are now straight.  I let my hair dry naturally tonight and when I when I looked in the mirrow it was sticking straight out!  What a mess!       I really want to cut it  short to let it just start over, but I really want to wait for my face to go down a little more.

Plus, this horrible Texas heat is not helping.   

Too funny.

[Jean]

Kelly, I know how you feel. A womans hair truly is her crowning glory and every woman wants her hair to look good. If you went in to a Sally's if there is one nearby, maybe they could advise you. Or, do you know a hairstylist well? There are tons of different shampoos to deal with this sort of thing. I wish you luck. But, if that doesn't work, get a pedicure. They always make me feel spiffy.

[Chris]

Your on Prograf right Kelly?

I have read about this on another boad and seems to affect women more than men. I haven't had the problem, but kind of wish I did so I wouldn't have to shave for a bit.

If I remember right from the post, there is a shampoo that helps a bit, but have to look for the post. Maybe even Donnia posted on that one, she belongs to that board also.

[monrein]

On Cyclosporine my hair grew everywhere...a blond troll I tell ya!  Also went very coarse and curly and my stylist would thin out about a third each time she cut it.  Then I switched to Cellcept and the curl went away, just waves instead and the hair started falling out.  I use Nioxxin shampoo and conditionner which seems to help.  I also changed my hairstyle to straight which requires using a straightening iron.  I still shave every day with an electric wet razor which is relatively gentle on the skin.  I have much less hair now than I did but still enough to look fairly normal.

Ah...the hurdles...do we ever run out of hurdles???

[kellyt]

I did get the Nioxxin when it was falling out, but I didn't use it every time because it made my hair so dry.  But I did notice a difference with it.
It seems mine is doing the same thing, Gail.  The first time I ever went on Prednisone back in the mid 90's I was on it for one year and my hair, which was already curly, but more wavey, went crazy curly!   Now, it's just the opposite.  It's not "straight", but not curly either.  Really ugly!   It looks like I got a really bad perm or something.   I bought a curling iron and that helps to give it a better and softer look.  I need to start looking at hair magazines I guess to find a better style.

Do you think that if I cut it really short and let it "start over" it will help, or do you think it will just be newer yucky hair?

[monrein]

I dunno, its so individual, Kelly.  I've always tried changing what I expect from my hair when it changes and find a style that accommodates the hair of the current phase but it's not me so much as my stylist.  She's good at suggesting new things although I keep any given style for a long time.

[Jean]

Also, upon advice from my hairstylist/daughter, if one takes a large amount or even sometimes a moderate amount of drugs, it also gets in to your hair. So, you can get a cleansing shampoo, the type you use if you have been in chlorinated water and I use that once a week. Takes the drugs out of your hair. Worth a try.

[MIbarra]

Dialysis totally thinned out my hair. It used to be really curly. Now I want to have a hair transplant! It is so thin and has no body.

I have heard if you use Nioxin shampoo and stop that your hair will fall out even worse.. or was that Rogaine? I don't remember.. I am hesitant to try anything on it for fear it will get even worse.

[Wattle]

That's just great Kelly! I have feathers for hair already! It had started to fall out with dialysis and now I am going to need a wig!   

Knowing my luck it will fall out on my head and grow everywhere else!   

[Wenchie58]

Kelly..
    I can so TOTALLY relate.  When I went in for my transplant I had curly hair to my waist..that I put in a braid....much like the braid of WTW in her pic.  Docs and techs were always moving the "log" as they called it when it got in their way.  Then the "fallout" began.  So it wouldnt be a total waste and before my hair was totally ruined I cut it off just below my ears and donated it to Locks of Love.
   Now my hair is just above my shoulders....thin and straight as a board.  When I pull it back into a pony tail its about as big around as a pencil. New growth has started and I can do a very good impression of Don King these days.
  You've got to look at the bright side...we are here to bitch about it!   

[kellyt]

Totally agree, Wenchi!  Totally!  And Don King is the perfect example! ha ha   My hair isn't long enough for Locks of Love, but I'd give to them in a heartbeat if they would take it!  Before transplant I never made it two days in a row without someone commenting on my hair.  Since transplant...nothing.   No one says anything bad about it at least.  They just don't comment at all.   

[charee]

me too my hair is gross it looks really dry and thin and it was the opposite before transplant its gone from being dead straight to wavy as well i was going to grow it abit longer but i think i will go shorter next haircut and see what happens but at least we can pee!!

[Wenchie58]

Wattle...
   If you react anything like I did  you will have much less hair on your legs.  Which is a really good thing, leaves you time to deal with the new hair on your chin!!!     
            

[kellyt]

I'm not growing hair under my arms anymore!  I like that side effect.     After transplant my legs were very soft and I only had to shave every few weeks, but that's starting to change, but nothing like it was before transplant.

[Wattle]

Ok..... The rollercoaster continues......

As you all know I had my transplant 5 1/2 months ago, and since then I have had 3 more generals. The last being four weeks ago for AVN of my right hip due to the steroids.

My problem today is....... I am afraid all my hair is going to fall out!!!!!!   

Everytime I touch it huge chucks come away in my hand! It has been happening for at least 6 weeks. I have lost about 1/3 I would say.
My son told me (while pushing me in the wheelchair!)... "mum your going bald, there's a big line in your head I can see your skin!!" arrggghhhh got to love 13 year old boys.

I have started using the nioxin shampoo and scalp therapy every time i wash, which is every second day.

I am on Tac, Cellcept and Pred.

For all those of you who have had similar experiences, did it stop?? and when?? My Neph just says "you wont go bald". Easy for him to say. He did mention swapping from Tac to something else but I am unsure if I am going to "jump ship " too early. Do I just give it a chance to start growing back? At this point I don't care if it grows back purple with green stripes.... and long as some of it grows back!!

[kellyt]

Isn't it horrible, Girl?  I was getting really nervous and I have thick hair.  Mine stopped falling out once we started to reduce the Prograf.  It's no longer falling out, but it's just not the same curl as before.  I must admit I need a new cut, so I guess I should hold my tongue until that happens.  Maybe someone can work a miracle.  If I let it air dry, it's a total mess!  Before it was just a mass of big curls.  Unruly, but not ugly.  Now it's ugly.   

[okarol]

Prograf alopecia:
This is a newly recognized cause of hair loss in transplant recipients on prograf. It doesn't happen to every recipient taking prograf. The full nature of this type of hair loss is unknown. We do know that it is characterized by gradual hair loss resulting in thinning over the complete scalp. There is no redness or scale on the scalp. There is no breakage of the hair. It appears to not lead to complete loss of hair, but only thinning. At this time, it appears to improve only if the dose of prograf is decreased or completely stopped. This alteration in medication for hair loss alone must be balanced with the significant benefit this medication provides the overall health of the transplant recipient and survival of the transplanted organ.

from: http://www.itscc.org/patients/other/hair.php

[monrein]

Cyclosporine made me grow hair everywhere and it was coarse and curly on my head.  This time, the prograf has made me lose at least a third, maybe more.  I have no answers to the problem although I use Nioxxin as my shampoo, only wash my hair once a week (which was hard at first until the balance of oils got sorted) and focus on thinking that thin hair beats dialysis.  Side effects suck.

[kellyt]

The Nioxin drys my hair out so much.  I only used it once or twice a week, and m hair felt gross to the touch after I used it.  I just purchased a new shampoo off of QVC and it was EXPENSIVE!  But so far I'm loving it.  I think the brand is Wenz or something like that.  It has put some curl, but, again, I need to go get a trim and a style cut.  My last cut was worthless.  I could have done it myself.  No shape or stayle.  Horrible.

[monrein]

Did you use the conditionner also Kelly?  It helps to leave in in awhile before rinsing out and do a moisturizing treatment every two weeks.  I like how my hair feels just not how much less there is.

[okarol]

Nioxin has a website and there are different products for different needs, like this deep conditioner - http://www.nioxin.com/en/products/intensive-therapy/deep-repair-hair-masque?xPos=54

[kellyt]

What I bought is a 3 step process with the last step being some kind of foam you put on your scalp and massage in and leave.  The other two are a cleanser and a scalp treatment or something.  That's all they had.  Maybe I'll go back and look.  Is there one that says "shampoo" and one that says "conditioner"?  Maybe I got the wrong stuff.     

[Chris]

I'm just glad I'm a guy right now! Wash and go, but haven't had the problems of Prograf like you guys have had. Sounds like a pain in the but to do 3 steps or wait several minutes before rinsing to be able to take a shower. 

[monrein]

Kelly, I use the cleanser, followed by the scalp treatment.  They both smell a lot like mint and are tingly.  I don't use the nioxin deep treatment at all (step 3).  I buy a deep nourishing treatment (actually my hair stylist does it at the salon but I'll ask her the name or what she recommends) for moisture and do that once or twice a month.  Also important to massage the scalp with the conditioner in.  My hair seems to have times when it comes out a lot and then it stops.  Right now is not so bad. 

[jbeany]

The salon at the local Walmart had an entire shelf of different Nioxxin products.  Took forever to read thru all the options and pick one that seemed to apply to my situation.  I got shampoo for "noticeably thinning" and a thickening spray.  I'm using the extra thick conditioner that comes with my box of hair coloring.  I've only used the combo once so far since I bought the stuff this weekend, but I like the results.  (At $17 bucks a bottle, it darn well better do something!)  I had to cut everything pretty short, which I don't like on me, but I was doing the Don King frizz thing too, with all the little pieces of stuff growing back in.  A short cropped shag with lots of layers is what all the books suggest for really fine hair, so I figured I'll try it for now.  The front and sides look pretty good now - no where near as thick as it was before the transplant, complications and months of minimal nutrition, but at least it looks normal.  I still have a really thin damaged spot at the back of my head from 2 months of bed rest and laying on a pillow in the same spot since I couldn't roll to my side because of the pain and the surgical drains.  The friction is not good for already damaged hair!

Mine is stick straight now - I've lost all my waves and curls.  I can't let it air dry anymore if I want to look like I didn't roll out of bed hungover - it's just a mess then!