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hi. all i have a ? sle/connective issue diagnopsis and been on plequnil and steroids for years. over past 6-9 months my steriods have been upped then lowered to try to manage fatigue ect. this is the worst period i have had in 10 years. when my steriods have been upped during this 6-9 months i have found i am getting alot of infections that make me feel really ill. the anti biotics also make me feel ill to-sick ect. i am due back at the rheumy in a couple of week s and feel my medication need s sorting as i am in a catch 22 situation. the clinincal nurse has mention low dose immuno suppressants . taking these woiuld mean i can lower steroid dose she thinks. can you please give me some advice regarding immuno suppressants and you personal experinces. although i am very symptamatic of sle my bloods have never been totally positive.

2 Replies

Hi Moss

I have been on hydroxychloriquine for years and go onto steroids regularly. Normally small dosage and doubling up when things get bad. Found they help pain but no real effect as far as fatigue is concerned. But taking steroids should, I think, help you stay free of infection, so definitely think your meds need checking again. It so often is a case of trial and error, which can be very depressing.

Hope they can get you sorted out



can i ask what does of steroid you take


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