Rebounding from steroid withdrawal?

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Just wondering if anyone else out there has had a similar experience to me? I've been on Clobatesol around 11 months. From the start I was unconvinced that it was helping me and felt I might even be allergic. Doctors and dermatologist however were dismissive and advised me I must continue the treatment. One Gyne told me to increase the to twice a day, the dermatologist told me to tail it off and go back to once daily during flare ups. I have found that every time I tail it off I get really red and sore, my skin peels and burns and becomes tight. I have tried bicarbonate of soda baths, sea salt baths, coconut oil, Hydromol, aloe vera, to name but a few of the more successful treatments. All alongside the clob advice. Recently I visited an Italian gyne because the clob was not working (currently temporarily staying there) She advised I should use a different steroid, Advantan combined with estriol cream. Applying them for only 10 successive days a month, then nothing. Estriol morning, steroid at night. For those 10 days things really improved but now, having stopped as advised, one week later I'm really suffering the peeling/red/burning/tightness again. At my wits end and feeling very low and hopeless. I want to stop steroids altogether because everything seems to have got worse and more constant since I was prescribed them last year. Don't know if I'm rebounding/withdrawing or flaring up again. Don't know if I should apply another dose of steroid and ignore the current 10 day only treatment plan. Has anyone had a similar experience and come out the other side? I know it's a chronic condition but I can't seem to get the treatment right or find a health professional who'll listen!

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5 Replies

  • Posted

    You sound to be having a rough time, Silly question perhaps,but do you reduce the

    Clog. gradually, e.g. alternate days for a week then every third day for a

    week etc until once a week for a month then only if you need it. This worked

    for me but I do tend to use it once a week

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    • Posted

      Hi Ann, thanks for your post. Yes, that's the advice I know but I've never managed to get below twice a week, once a week produces the 'rebound' type symptoms sad Even twice a week took a long time to get to. Then I'm never sure if the flare is due to the reduction in clob or the disease itself....

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    • Posted

      Perhaps twice a week is your optimum level and if that is what

      you need to keep things under control perhaps that is the way to go.

      I use coconut oil twice a day and that keeps things moist and

      reasonably healthy, but I do use the steroid once a week, and sometimes

      twice if needed. We need to be in charge of our own health, and I

      don't think that the professionals really understand the realities!!

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    • Posted

      I guess so, no one really understands it unless they have it themselves (which I wouldn't wish on anyone).

      Perhaps I'll try twice a week on the new treatment (advantan & estriol) as it seems to suit me better than clob. When i used it for 10 days it was the best I'd been in a year!

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  • Posted

    No I haven't. Diagnosed Feb 2017 with LS. Use Clobetasol twice a day. Use a mixture of 1 tsp baking soda and 1 tsp borax mixked with warmed bottled water. I put it in a squeez bottle. Use this after each bathroom visit. Blot dry

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