Hi everyone! Just found this site which is so helpful. Finding that lots of my symptoms and feelings are shared by so many others.
After diagnosis I got down from 20mg to 3mg prednisolne. Could not reduce any further but then pain etc returned so increased and am now on 5mg and hydroxy. for last year. Its not working now at this level as I have lots of problems with pain and swelling and the brain fog, can't move thumbs or bend some fingers some days! Also mega chest pain, thought it was a heart attack and a burst blood vessle in mouth - very odd and sore!
Recent blood test shows slightly raised anti DNA, low red blood cells and low vit D. Having blood test for B12 and ferritin and a liver test next week. When I see rheumy next should I ask if something like methotrexate is better than increasing steroids? I find here that other people get 'manic' on steroids. Sometimes I scream inside my head and sob! not just cry but howl like my world has ended! It could be the lupus tho and the extreme tiredness but quite a scary emotion! I take up to 6 strong co codamol a day which GP doesn't like but Rheumy says is OK!
I also have ulcerative colitis, sjogren's, fibromyalgia which predates the lupus, and the usual mouth ulcers, migranes if I not careful etc..
I have to work as partner made redundant and has own problems! I am too tired to do anything else tho' so where to go from here??