Help with LS flaring up???
Posted , 7 users are following.
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?
0 likes, 12 replies
Morrell1951 woozie
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woozie Morrell1951
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Morrell1951 woozie
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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.
Chrisy woozie
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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!!!!!
Chrisy woozie
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woozie Chrisy
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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.
Morrell1951 woozie
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"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."
zarathustra woozie
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woozie zarathustra
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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!
kate207 woozie
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Morrell1951 kate207
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trishafox1967 kate207
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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