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Can anyone provide their care plan for lichen sclerosus?

Posted by rose66 @rose66, Jan 1, 2025

Hi,
I see a local dermatologist to manage my symptoms. I had a biopsy a few months ago to confirm my diagnosis.I am using a cream steroid now 2x a week for maintenance ,and more cream steroids when I have a flare up.
My symptoms now include very smelly urine with bits of tissue(?) in the toilet, and low pelvic pain. I feel like this is progressing.

Can you share your experiences with this disease and your symptom progression and who manages your care?
I have read that 2-4% of cases can become squamous cell cancer, as a colon cancer survivor this isn't good news .
Thank You.

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dcohnela | @dcohnela | Feb 3 2:10am
In reply to @swalex "@dcohnela Clobetasol is a potent corticosteroid, similar to cortisol—I've been using it for many years. If..." + (show)
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@dcohnela
Clobetasol is a potent corticosteroid, similar to cortisol—I've been using it for many years. If you're experiencing another flare-up, it could indicate that your cortisol levels are low and inflammation is high. Have you ever had your cortisol levels tested, or undergone an ACTH stimulation test (also known as a Synacthen test)? I'm speaking from 66 years of experience with both psoriasis and low cortisol.

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@swalex I'm aware of the potency of colebastol that is why I asked the other person about the herbal remedy. I'm not sure ACTH test results would be useful in the managing of my lichens.

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echapman | @echapman | Feb 3 8:13am
In reply to @dcohnela "@echapman Hi! this really works for you? how often do you use it and which one..." + (show)
Profile picture for dcohnela @dcohnela

@echapman Hi! this really works for you? how often do you use it and which one do you use?
Clobetasol is the only thing that works that I can tolerate. It just cleared up and I got another bout of it, which is unusual for me, I usually get a flare once every year or two. So I'm looking for alternate solutions.

I apprecite your time in responding to this.

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@dcohnela Of course it works for me. That's why I use it every day after each urination. Wonderful stuff.

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cnnelson | @cnnelson | 3 days ago

I hope to swim in an outdoor, chlorinated pool this summer and would like to be sure this does not lead to a flare. My doctor advises not to sit around in a wet swimsuit and to rinse off after each swim. I'd love hear what other swimmers have found to be useful.

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