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clobetasol and hair loss

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paula92906
paula92906

I have lichen sclerosus. I have been using clobetasol and I have been losing my hair. Needless to say none of this is making me feel very sexy. Are there any alternative treatments for this condition?

Also, I literally never get sick. I wionder if other people experience this strange circumstance. People around me get colds and the flu and I never do. This makes me wonder if I have an overactive autoimmuine system and if I should be pursuing some alternative therapies on this front. 

0 likes, 26 replies

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  • karen41728
    karen41728 paula92906

    Posted

    Hi Paula is the hair loss all over only I have lichen planus and I have hair loss it is autoimmune xx
    • paula92906
      paula92906 karen41728

      Posted

      Hi Karen, The hair loss is on the front of my scalp. Where is your hair loss? Are you on clobetasol? Is that what is causing your hair loss? Or, are you saying having an auto immune disorder causes hair loss on its own. I noticed on a list of side effects that hair loss was a side effect of clobetasol.
  • Guest
    Guest paula92906

    Posted

    Hi Paula,

    An alternative to Clobetasol - which some people have had more success with, including myself - is Protopic (generic name Tacrolimus).  If you search for it on this forum, you'll find several threads discussing it.   However, that said... I've never heard of hair loss from the use of Clobetasol!  But then I've never fully read the fine print either.  It could be; just not sure.

    Good luck!

    Denise

  • annabel01635
    annabel01635 paula92906

    Posted

    Hi Paula,

    Yes, I agree, doesn't do great things for general self esteem!  I also have both conditions but am sure the clobesol has not caused the hair loss.  I have lost about an  inch around my hairline - perhaps more around my temples which look extremely naked.  I think the hairloss started before I received any treatment for the LS.  I believe both conditions started with or just after menopause. I think if you have one autoimmune condition it is quite likely you can get another.  `My LS has no itching or other symptoms except for shrinkage. The hair loss (frontal fibrosing alopecia) is being treated with a daily tablet of hydroxychloroquine (anti-malaria drug) which is an anti inflammatory.  It doesn't seem to give me any side-effects so I am on it for at least a year (that's what my dermatologist has recommended).  Have you had the hair loss diagnosed?   It took me a while to realise it was actually a thing! Its progress is really slow or perhaps has stopped while I am on this drug.  The experts say this kind of alopecia usually stops after a few years - although up to 5 inches of hair can be lost. Help! I will be definitely wearing a wig if that happens!  I'm not sure why but it is some comfort to know I am not alone in going through these upsetting conditions.

    • paula92906
      paula92906 annabel01635

      Posted

      Hi Annabel,

      Thank you for sharing with me. It helps me too to hear from other people going through the same thing as me. I feel like if a lot of people suffering from the same or similar conditions put their heads together maybe we'll be able to figure something out. I've never heard of using an anti-malarial drug for hair loss. I am definitely going to mention it to my doctor. 

      Recently someone told me about latisse for helping with hair growth. I am going to check that out too. However, I am determined  to get to the bottom of this auto immune situation.

      Paula

       

    • debbiedougal
      debbiedougal paula92906

      Posted

      hi paula ive had hair loss gradaully at first for year and half , frontal hairline also rest of my hair is very thin now. a few professionals over the months have mentioned autoimmune but all blood test came back fine, since using protopic and eumovate alternately everynight on hair line for 6 months it seems to be getting worst, not sure if its the creams or the actual lichen planopilaris that i have been diagnosed with....i really think my immune system is awol as i have heaps loads of other aliments that all refer to autoimmune. have you mananged to get any further in this mystery..cheers debs 
  • carol350
    carol350 paula92906

    Posted

    No hair loss from that but the best thing I can recomend is Deprobase it has saved my life I use it after every urination x
    • paula92906
      paula92906 carol350

      Posted

      Thanks  Carol, I am getting so many more ideas from this site. 

      Paula

  • Morrell1951
    Morrell1951 paula92906

    Posted

    I'm 63 and lost half my hair a year before I started Clobetasol. Stress is a factor, and my psoriasis. The only side effect of clob I would worry about is what happens if you use too much and especially if you get it on healthy skin.
    • Guest
      Guest paula92906

      Posted

      Hi Paula,

      The problem with Clobetasol is that - like a typical steroid-based medication - it thins the skin.  Therefore, applying it too frequently to more "delicate" areas of the body, such as of course where LS resides, can create secondary complications that are almost as problematic as the disease itself.  That is why some dermatologists, such as mine, prefer their patients to use Protopic (Tacrolimus is generic name), which is a non-steroid medication that works on the disease in a completely different manner.  I'm not an expert but here's how I'd explain it: Clobetasol is a strong corticosteroid that accelerates how skin grows and sloughs off.  Protopic/Tacrolimus is an immunosuppressant that stops your skin's immune system from flaring up in the first place.

      Hope that helps.  Good luck!

      Denise

    • Morrell1951
      Morrell1951 paula92906

      Posted

      Paula,

      If you watch Dr. Goldstein's presentation, he explains the very careful use of Clobetasol. The concept is that LS skin is too thick anyway, so thinning is good. But it's important and difficult to make sure the ointment only gets on the LS-affected areas. Some women here have asked their doctors to show them exactly where to spply it. I'm now using Tacrolimus, too. Maybe Clob didn't work very well for me because I had used topical steroids on my psoriasis for many decades. I stopped around 2000, but maybe I was burnt out on them.

    • paula92906
      paula92906 Morrell1951

      Posted

      Thankyou for sharing this with me. I am starting to think that I should discuss Tacrolimus with my doctor as well. I hope eventually someone comes up with a way a tackling the root cause. Symptom management with such strong drugs goes against my values. I can't imagine these creams are good for any of us in the long run.
    • Morrell1951
      Morrell1951 paula92906

      Posted

      I know, I feel the same way, at least emotionally. But after I read up on long-term side effects of steroids online back around 2002 I decided to stop all use of topical corticosteroids on my psoriasis. I had years of rebound flares after that, worse symptoms than I'd ever had before. It finally calmed down when I quit my job and moved to the country. But as soon as I stated dating and felt the usual anxiety, my face would redden, swell and burn during each first date. I was a mess for years until I settled in with my final man. I don't know whether this means I never should have started using prescription creams back in my teens or I shouldn't have gone off them cold-turkey. But when a psoriasis flare subsides the skin is like new again. LS, on the other hand, leaves disfigurement in its wake. So that's why I haven't even though about trying this drug-free.
    • lizziewizzie
      lizziewizzie

      Posted

      its the long run we do surely need to think about.
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