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Hi to everyone, I was recently diagnosed with SS, red painfull sores,fever, flu like symptoms, headaches, and severe pain in in lower legs mainly around the knees and ankles, I think I took more painkillers in 3 wks than I have in my life.. I was wrongly diagnosed for a few wks Dr's thought I had shingles and gave me meds for that but after blood results came back negative did a biopsy and came back with SS. Am now taking prednisone started on 50mg a day seemed to be helping but once I tapered off to about 12mg a day spots and pain started to come back. I am now taking about 60 mg a day for 7 days spots have cleared, pain in legs still there but no painkillers needed and going to start cutting down but from what I am reading I am concerned it will just return, I have managed to get in to see a dermotologist tomorrow and I am hoping that they have some knowledge of SS. Is SS something that will go away or are med required to control it? I would love to here from all, I am from Melbourne Australia.

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  • Hi debcol,

    Sorry to hear that you are struggling with the symptoms of your SS.

    In answer to your question, most people only have one episode of SS, but at least 1/3 of people with SS will have repeat flare-ups. Flare-ups tend to be more common if the SS has developed secondary to another condition. However, this does not mean that the SS will never settle down.

    If you are having problems coming off your steroid medication, i.e. your SS keeps flaring up when the dosage is reduced, there are other medications that you can take. Read more @ helpforsweetssyndromeuk.wor...

    The majority of people with SS will no longer need to take medication once their condition has settled down, or will only need to take it now and again. However, the length of time someone will need to take their medication for can vary a lot.

    Find a few self-management tips to help reduce the risk of a flare-up @ helpforsweetssyndromeuk.wor...

    Shell. ;-)