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.
Hi Paula is the hair loss all over only I have lichen planus and I have hair loss it is autoimmune xx
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.
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
Thanks
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.
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
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
Thanks Carol, I am getting so many more ideas from this site.
Paula
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.
What happens if you use to much or get it on healthy skin?
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
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.
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.
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.
well observed. I was going to ask if you had a low thyroid?
I have just found this site and this is the most relevant to me.
I am almost sure I have Lichen Sclerosus and have been suffering intermittent sympoms for a few years. I have been suffering soreness in the inner lips of the minor labial area and around the urethethral opening. No signs of nfection. I have now noticed a white area and I feel confident enough to treat as an inflammatory skin condition with a strong steroid ointment - the ointment I was given for a patch of Lichen simplex chronicus I hae near my groin. I do not know if it is connected. As I have to wait 2 months to be seen by a gynaecologist and I cannot stand the pain and discomfort of this acute exaceribation that I weighed up the pros aqnd cons to self treat. From all my reading it seems better if you treat it early. I know you should not self treat but 2 months of steroid ointment is a risk I am prepared to take. After 3 days there is an improvement in appearance of the tissues and the soreness so I will follow the recommended treatment until I can be seen in clinic. I am also aware that it may interfer with the diagnosis but if I can find a way to releve the symptoms and prevent the scaring and atrophy then I will risk it.
I also like Paula never seem to get coughs and colds and I heal very well and feel very healthy. I do not worry about hair loss from steroids as it is only a small area to absorb the steroid and for only a few months. I do worry about no sex life or disfigurment if it can be prevented. It seems you get less chance of complications if treated adequately and early.
My son has been plagued with eczema all his life which I have treated with strong steroids in short burst when necessary to get on top of it. I am now using his emolients to wash with in the shower which I find soothing. There is Atopy in the family but I have not had any skin compaints until menopause. If it is not LS then as long as I do not make it worse at least I can report the effect of the steroids and we can go from there
I am not advocating self treatment but I do encourage everyone to check with a mirror to see what your 'normal' is and recognise when something is different. This is how I noticed the progression and the improvements.
I only hope I respond to treatment and go in to remission - the best possible outcome - not so often discussed on forums. I will keep you informed.
I can see the logic in your decision, Matlor. Side effects from the ointment are the least of our concerns. Don't expect speedy results, though. Dermovate can take months – up to two years to get things settled right down, depending on how aggressive your version of LS is. I've had it forty years and experienced a number of remissions, including reversal of fusing. But what I've read is that remission doesn't happen post menopause. Look around on this site. Soak in baking soda baths, use coconut oil and don't have sex if you're already uncomfortable. Keep us posted. (You could take a picture now to show the gynae). Most don't do biopsies and they won't do one if you're asymptomatic.
I am going to rely on my description for the consultant as I would hate anyone to accidentally find a photo of my vulval area.
It is so much better after a week of treatment but seems to have left me with some soreness especially of the urethra.. I suppose I am being impatient..
What is the science behind baking soda baths? I have not had a bath in years as I prefer a showers. I am using dermol wash for the vulval area to protect the area from the soap I use on hair and body. I may try petrolium based grease to protect the area when I go for my swim. Apart from good healthy food and exercise I cannot think what else I can do. I try to remain positive but with the constant burning of the urethra to remind me it is there, it is difficult..
Traclimonas, Protopic, seems to be second line treatment as the safety long term is not tested. It can also sting when used. They do seem to agree that Dermovate.used accordingly to BAD guidelines is the first line of action.
We constantly look for alternative natural treatments as I did for my son for years - diets, natural products, environment etc We think something makes a difference then it is disproved in the next flare up. I now tend to wait for the science and read all the studies but everyone is different.
.I do feel that with any long term condition you have to be armed with knowledge, be in charge and cope with it the best you can trying not to let it interfere with your life too much. It is useful to read what everyone else has found out after coping with it for years. Thanks.
Sorry I meant to say Clobetasol not Dermovate as first line of treatment but any strong steroid once a day for a month and then every other day for a month and then twice a week will most probably be as good. Only increasing it if it flares up. That's the theory anyway but I am sure it is different in practice, as it always is. .