Help with LS flaring up???

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Hello all.  About 8 years ago, I was finally correctly diagnosed with LS after the tissue was actually tested and was prescribed Clobetasol and Estrace.  SInce I had breast cancer 16 years ago, the Dr was hesitant to give me Estrace at first.  I must admit that I don't regularly use these meds as something just seems to aggravate the skin more when I do.  I don't have a partner now and haven't for awhile but would like to preserve things to be working when I do someday find him!  I have been hesitant to use the Clobetasol since it seems to thin the skin and that is most of what the problem already is.  When I did use the Clobetasol regularly in the past, I did not see the labia become any less fused over and it felt like I simply was aggravating the skin  making it more sensitive and burning.

Now I am having a flare-up for no apparent reason other than biking perhaps, although I wear the best padded shorts. I'd like to treat it and I just saw Emuaid online and wonder if anyone has had good success with it. Also, do any of you think that I should use the Clobetasol regularly regardless of the fact that it seems to exasperate the problem?  I don't want to bring on skin cancer but I don't think Drs. in the US really know what to do for me since I had the first one seeing the problem regularly for at least a decade and never having a clue as to the real disease.  My new gyno seems to know the most about this now but I am not sure that is much at all or at least not new information.  He says that the Clobetasol will thin the skin first then make it better and strengthen it.  Has anyone been told that?

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12 Replies

  • Posted

    Woozie, I've been seeing that the latest studies indicate the thinning is not what they once thought it was, partly because the particular type of flesh in the vulva aren't as vulnerable. The idea is that Clob prevents LS inflammation, which is much more drastic and damaging that the possible small amount of thinning the ointment might create. It's reasonable that some women would react badly to Clobetasol (Dermovate in UK). I wonder if you've been using it on an as-need basis in too-large doses? I've made a 50g. tube last nearly a year, mostly using it twice a week. My gynae said it's supposed to be a steady low dose.
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    • Posted

      I've got .05% strength and when the pharmacist saw that she looked alarmed when I said where it was to be appled. She said she more commonly prescribes a lesser strength for other uses and had never heard of LS.  If I would begin using it regularly again, 50g would last a year for me too. But is it too strong?  And I was never sure if Dr meant for me to use it on the inside of labia flap, I know he wanted it used on the outside of it and around the top where the clit is covered.
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    • Posted

      Clearly the pharmacist is unfamiliar with LS. For thirty years I was prescribed very weak corticosteroid creams and ointments for psoriasis. I was told not to use it around my eyes (which I sometimes did, because that's where it was so unsightly!) and not on my genitals (so I never did) – that may have been a GP. Anyway, it's only recently that it's come out that the thinnning isn't what they had thought. I can attest to the fact that it's fine around my eyes at age 62. I have a friend who has psoriasis much worse than I do. She doesn't use anything but herbs and she's very wrinkled – her face and arms make her look like she's much older than she is (70).

      You can use the clob all around the vulva. Mucous membranes are less affected even than regular skin, I believe I read that somewhere. Google the thinning, I think you'll find quite a few bits that will put your mind to rest.

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  • Posted

    Hi Woozie,

    Search on a well known search engine for why do doctors prescribe clobetasol proprionate.  Then click on the various results.  I found a research medical report very informative and the result was that not using it means you are more likely to develop vulval cancer.  It also found that women who failed to treat their LS or who didn't control it properly were more likely to develop cancer.  The only treatment that appears to control it is topical ointments like clobetasol proprionate 0.05% together with emollients and moisturisers.  No choice comes to my mind!!!!!

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  • Posted

    P.S.  I hope your doctor is prepared to research LS so that she/he can prescribe for you properly.  I haven't been told that it will strengthen it but I was told that the thinning is not what you fear as the skin in that area is regenerative.  It has to cope with a lot of friction so that makes sense.
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    • Posted

      Thanks.  I will keep trying to research this.  I was hoping there would be more clarity, something new working lately since I last combed thru every resource I could find.  When I saw the Emuaid advertised, that seemed to make sense, as I thought emu oil was a good harmless moisturizer for there.  Not a cure or anything like it but some relief. Lots of testimonials on the website but since it was the seller's website, I was hoping to hear it elsewhere.

      You are probably right, I should use the clob regularly even if it seems to make things worse.  When I had cancer treatment, that certainly was making things worse before I got better!  As for regenerating skin, I don't hold much hope for that.  It is pretty atrophied down there whcih likely was caused by taking anti-estrogen drugs for 10 years after breast cancer to keep it from recurring. 

      Thanks so much to you and Morrell for sharing your thoughts on this.  I think I needed a jolt on it.

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  • Posted

    I found the British Association of Dermatologists' guidelines for the management of lichen sclerosis.

    "The rationale for once-a-day application is based on pharmacodynamic studies showing that an ultrapotent steroid only needs to be applied once a day on extragenital skin. If symptoms recur when the frequency of application is reduced,

    the patient is instructed to use the treatment more often until the symptoms resolve. They can then try to reduce the frequency again. A 30-g tube of clobetasol propionate 0.05% should last at least 12 weeks. If the treatment has been suc-

    cessful the hyperkeratosis, ecchymoses, fissuring and erosions should have resolved, but the atrophy, scarring and its associated pallor will persist. About 60% of patients experience complete remission of their symptoms. Others will con-

    tinue to have flares and remissions; they are advised to use clobetasol propionate 0.05% as required. Most patients with ongoing disease seem to require 30–60 g of clobetasol propionate 0.05% ointment annually. In our experience, the long-

    term use of clobetasol propionate in this way is safe and there has been no evidence of significant steroid damage or an increase in the incidence of SCC. There is one short-term study of up to 12 months showing the safety of continued

    use."

     

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  • Posted

    Hi Woozie,  Hi guys;  did you see the post by Dsauce?  I suggest you go and read it.I added my comments along same lines.  Medics are trained by Pharma Coy supported training schools,  and are taught to treat symptoms,  not cure the disease;  Pharma keeps selling products to treat symptoms,  they really don't want cures. Think about it,  guys;  Pharma products don't do much good as I see it.
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    • Posted

      Hi Zara and all,

      Yes, I am taking all this in.  It's confusing as it is so conflicting.  And I don't think the US is anywhere nearly as informed or progressive as the rest of the world.  I am going to take some action that will likely be a mix of methods but I will get more aggresive with it.

      What a great forum you have here.  Good to know we are not totally alone with this.  Sisterhood!

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  • Posted

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  • Posted

    Woozie, my dermatologist and gynacologist (I'm in the Republic of Ireland) both agree that if you can get the Ls under control with Clob then you can try to reduce gradually to a daily application of over-the-counter hydrocortisone, which is far less potent than the clob.  Because its so much weaker a daily appilication is recommended, and this has become just part of my nightly routine - I used to forget the one-a-week session with the clob.  This has worked well for me, together with trying to avoid sugars, wine and beer, which all seem to cause flare-ups.  I was so badly damaged that my biopsy took six weeks to heal as the stitches just tore through the LS diseased tissue, but now I'm back to wearing my jeans and hill-walking.  I'm 59 and have healed so don't dispair!
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    • Posted

      Hi Kate. I'm just reading your reply from 4 years ago. I've been looking for someone in Ireland who deals with LS. Can you give me some information please. Many thanks Trisha

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