Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


Hair Today, Gone Tomorrow

  • Please log in to reply
6 replies to this topic

#1 beverly


    Bronze Member

  • Members
  • PipPip
  • 15 posts
  • Location:Washington

Posted 30 March 2007 - 08:10 PM

I am wondering if any of you ladies have had noticable thinning hair associated with Scleroderma? I am 33 and know it will happen eventually but it seems all of a sudden wham there's my scalp.

Love to hear from you.

#2 Elehos


    Silver Member

  • Members
  • PipPipPipPip
  • 196 posts
  • Location:Upstate NY

Posted 31 March 2007 - 12:39 AM

Hi Beverly,

Oh, yes, we're probably all familiar with that! I would get periods of thinning and regrowth starting in 1982, and with lupus flares, this can also happen. Last year the diagnosis of sclero came in, and over past few years I've noticed that the regrowth isn't really happening as much, if at all, so it's just learning to work with what I've got. I have been experimenting with various scarves and headbands lately (again), so maybe this summer I'll find a "look" that works well, and may be able to hum a few bars of "I Feel Pretty" for a change :D . Take care, and welcome to the board!

Hugs and best wishes,

#3 Sam


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 639 posts
  • Location:Delta, Ohio

Posted 31 March 2007 - 02:18 AM

My hair started thinning out years ago, but now its not too bad. I take folic acid and it helps with that but mainly take it to help with my energy. I also use a more expensive shampoo too but I always try making my hair more fuller with some products. If I don't do something with my hair its flat and it doesn't look very nice. Well just wanted to let you know your not alone in this. Sam

#4 janey


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,113 posts
  • Location:New Mexico

Posted 31 March 2007 - 04:04 AM

My hair has thinned tremendously but most of it is due to medication, particularly the immunosuppresants. My long, thick and wild hair has been replaced with short and more tame "mature" hair. It took a while but my hair stylist finally found a cut that works great and people don't even notice it. I get lots of compliments about my hair to where I don't even think about the thinning anymore (except when my hubby has to unplugged the shower drain - again! :) )

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#5 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,895 posts

Posted 31 March 2007 - 08:25 AM

Hi Bev,

When I first started plaquenil I lost hair by the handfuls. It was like I had cancer. Thank goodness I have tons and tons of hair and so it is not noticeable. It stopped falling out after my body adjusted to the plaquenil which took about 10 months. Have you just started this medicine per chance?

Bring it up to your doctor, there are things you can try.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#6 Jordan's Mommy

Jordan's Mommy

    Senior Bronze Member

  • Members
  • PipPipPip
  • 70 posts

Posted 31 March 2007 - 09:41 AM

Hi All,

My 6 year old daughter's hair has definitely thinned out since she started taking Plaquenil over a year ago. Nobody else notices it because she has so much hair, but I can see the difference. I hope it will stop!


#7 beverly


    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 15 posts
  • Location:Washington

Posted 31 March 2007 - 05:31 PM

Thank you everyone,

In regards to medication I have been on Prilosec for 3 years and nifedipine for a little over a year. I have noticed regrowth so there is hope. My husband and I both cut hair and its hard to see it go. It's truly a minor inconvenience, I am just learning about all the different affects scleroderma has on ones body. It's like a crazy mystery with no rhyme or reason why things happen when they do.

Thank you ladies for your input and information.
Take Care Beverly