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Really concerned about long-term effects of topical steroids
Something suddenly clicked in me as I was applying topical Clobetasol steroid foam, and I became very concerned about what Clobetasol is doing to me inside. My new dermatologist told me to apply it twice a day for at least four weeks (as compared to 2 weeks on, 2 weeks off prescribed by my other dermatologist). Since it's working (I have stubble and decreased amounts of hair falling out) I'm sure she'll want me to stay on it. But it just feels wrong! I've been on the Internet researching side effects (adrenal gland issues) and I don't know that it's worth it. Every article cautions against long-term use and I've been on and off it since February, which is 4 months now.
Since I"m 100% healthy except for the alopecia, I don't want to make things worse by putting this heavy-duty steroid on my head, having it be absorbed into my bloodstream, and possibly have some of these side effects I've read about. I've already developed an enlarged fontanel on the top of my head.
Has anybody else stopped the steroid cream/foam because you were worried about side effects? If so, what were the results?
Since I"m 100% healthy except for the alopecia, I don't want to make things worse by putting this heavy-duty steroid on my head, having it be absorbed into my bloodstream, and possibly have some of these side effects I've read about. I've already developed an enlarged fontanel on the top of my head.
Has anybody else stopped the steroid cream/foam because you were worried about side effects? If so, what were the results?
Replies to This Discussion
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Permalink Reply by BaldGirlsDoLunch.org on
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The most case studies of Clobetasol use are with moderate to severe cases of psoriasis. There are no studies of long term use with alopecia areata. If it was me, the person I would ask about risks and rates of complications and how to monitor potential problems would be a dermatologist who sees psoriasis patients day in day out.
If you read too much on the internet you can drive yourself crazy because you can't tell which studies are very small or very large, valid or junk science unless you're able to decipher the original studies.
A smart dermatologist with a big psoriasis caseload will be able to tell you what is considered long term use with Clobetasol - it could be years and years. I think it's best to discuss this with your prescribing doctor and ask her to provide you with the known evidence one way or the other on the valid, published data on use. If she cannot or will not, seek the nearest large teaching hospital to where you live and find out who the psoriasis specialist is there. In New York it's Dr. Mark Lebwohl at Mount Sinai Medical Center. You may find out after all that the risks are really very small for short term and/or intermittent use. Let the smartest doctor in the room give you the known stats. That's how I decided long ago which treatments for extensive AA I would try and at which point Mark Lebwohl and I agreed the possible risks outweighed the benefit. We decided together.
Keep in mind that many derms being aware that AA turns itself on and off with no intervention of any kind, do sometimes prescribe things for patients to schmear on their heads to keep the patient busy while everyone waits to see what the aa will do by itself. So ask the doctor, what is her purpose with this? what % of patients see results? and what usually happens when they stop using it? Ask her if you're just stabbing in the dark for something to do or does she have evidence that it is effective and in what types of cases ( severity, duration, age of patient).
Which reminds me there is an ongoing study evaluating the issue of adrenal suppression in the use of intralesional corticosteroid ( Kenalog injections) for aa and I will put a link to that study in my blog at our main site.
Thea
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