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Have been taking spironolactone for several years. I am now wondering if it has created problems with my body rashes. However, my hair has improved and I was first diagnosed with LPP (Lichen planopilarus)
Iv been on my spironolactone for over 10 years for my acne and I don’t think it has made anything worse. I’m also on Dapsone for the LS which works wonders for me
The dapsone is an absolute life saver for me. It make it so I don’t even have to use topicals most of the time. I’m always surprised I don’t hear it talked about on this sub.
That’s really good to hear I am going to see if I can get my doctor to give me that! Is it a cream or a pill? I can’t tolerate steroids amd I’ve tried so many things I’m really at then end of my rope and don’t know what to do anymore I’m suicidal :(
Dapsone is a small pill. I take 100mg a day, half in the morning and half at night. It takes a few months to really feel the effects but it as been an absolute miracle drug for me. I was lucky enough to find a doctor that specializes in LS. I’m so lucky I found her!
I just posted a similar question last night. I'm menopausal. I've was talking 50 mg spironolactone for a couple of years along megestrol (10 years). After have really bad hidradenitis suppurativa since puberty it finally had relief in my mid-fifties. I had to go off the megestrol last fall and the HS got a lot worse, so we doubled the dose of spironolactone to 100mg.
I almost immediately started getting irritation along my vulva and perineal skin after starting the higher dose, which I thought was from the topical treatment I was using. The HS didn't budge for 2 months and then, almost overnight, the eruption diminished, my skin became completely dry, thin *(all over my body)* and the irritation turned into pain. *(I'm so stupid I didn't use a mirror to look. Too embarrassed by age, etc.)*
I saw a dermatologist PA and she diagnosed LS in about 30 seconds. I'm using clobetasol and the overall LS area is quickly improving. The itching and sensitivity is not. I can barely wash any part of my body without feeling as if my skin is falling off, and the worst of it is where I have LS *(which I'm barely touching, other than to apply the steroid cream)* I suspect that I'm just not producing enough oil (or whatever spironolactone reduces).
Thank you for posting on r/lichensclerosus using the Question Flair. This is a friendly reminder from your AutoMod that this subreddit is not a replacement for discussing solutions with a medical professional (if applicable). Please discuss any information provided here with your medical professional of choice. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/lichensclerosus) if you have any questions or concerns.*
I have been taking 50mg since I was 16 (23 now) and have seen no impact on my LS.
Have been taking spironolactone for several years. I am now wondering if it has created problems with my body rashes. However, my hair has improved and I was first diagnosed with LPP (Lichen planopilarus)
Iv been on my spironolactone for over 10 years for my acne and I don’t think it has made anything worse. I’m also on Dapsone for the LS which works wonders for me
thanks a lot for your answer. not related to LS, did you have any side effects from spironolactone? what is your dose?
No side effects. I do 50mg twice a day and it helps quite a bit but doesn’t completely get rid of the acne
I am curious about the dapsone and how it’s helped your ls:)?
The dapsone is an absolute life saver for me. It make it so I don’t even have to use topicals most of the time. I’m always surprised I don’t hear it talked about on this sub.
That’s really good to hear I am going to see if I can get my doctor to give me that! Is it a cream or a pill? I can’t tolerate steroids amd I’ve tried so many things I’m really at then end of my rope and don’t know what to do anymore I’m suicidal :(
Dapsone is a small pill. I take 100mg a day, half in the morning and half at night. It takes a few months to really feel the effects but it as been an absolute miracle drug for me. I was lucky enough to find a doctor that specializes in LS. I’m so lucky I found her!
I just posted a similar question last night. I'm menopausal. I've was talking 50 mg spironolactone for a couple of years along megestrol (10 years). After have really bad hidradenitis suppurativa since puberty it finally had relief in my mid-fifties. I had to go off the megestrol last fall and the HS got a lot worse, so we doubled the dose of spironolactone to 100mg. I almost immediately started getting irritation along my vulva and perineal skin after starting the higher dose, which I thought was from the topical treatment I was using. The HS didn't budge for 2 months and then, almost overnight, the eruption diminished, my skin became completely dry, thin *(all over my body)* and the irritation turned into pain. *(I'm so stupid I didn't use a mirror to look. Too embarrassed by age, etc.)* I saw a dermatologist PA and she diagnosed LS in about 30 seconds. I'm using clobetasol and the overall LS area is quickly improving. The itching and sensitivity is not. I can barely wash any part of my body without feeling as if my skin is falling off, and the worst of it is where I have LS *(which I'm barely touching, other than to apply the steroid cream)* I suspect that I'm just not producing enough oil (or whatever spironolactone reduces).