I was diagnosed with SLE in 2008 but they said th... - LUPUS UK

LUPUS UK

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I was diagnosed with SLE in 2008 but they said they think I have had it for a very long time. I was on very high doses of prednisone!!

krisdy profile image
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from the high dose of prednisone I got steroid phycosis I ended up on a vent.and my heart had stopped 3 times in the helicoptor that was 3 years ago. anyone else had this??

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krisdy
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Hi Krisdy, no I personally have not had this problem with steroids. Sounds scary, what an awful time for you and your loved ones. Are you on other meds now, and is your lupus under control ? Hang in there, hopefully another member can identify with this.

standingfirm profile image
standingfirm

Hi Krisdy I was also diagnosed in 2008. I have had two heart attacks and stents put in I was on prednisnisolone with methotryxate and at times had prednisolone infusions at present things seem stable I am still on 10 mg of prednisolone but hv switched to azaziothripine along with numerous other drugs I do not hv exactly the same probs as you but I hv not spoken to anyon with heart issues. I hope things remain stable for you Take care x

porridge profile image
porridge

Hi krisdy. I didn't have a very good experience with prednisone either, though I didn't have as bad a reaction as you. Now all my rheumatologists know to avoid prednisone if possible. Hope you're doing better now! x

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