I have just been diagnosed with SLE/ Arthralgia / Serositis / Sicca symptoms and cervical lymphadenopathy. I am trying to come to terms with this new (to me) and scary illness. I became very ill 18 months ago and was diagnosed with ME. I felt like my life was over, I had to leave work and stop studying for my BA. As a single parent it was difficult and felt impossible at times. I had a blood test for my ANA and tested positive, I was sent to see a fantastic rheumatologist at the Freeman hospital in Newcastle called Dr Arthur Pratt. He sent me for all sorts of tests and I was told the diagnosis 6 weeks ago. He has put me on Prednisolone and Hydroxychloroquine.
I have a few questions which I was wondering if anyone could kindly answer or even have an opinion on please?
How long does it typically take for the steroids to work? It's been 6 weeks now and every day I feel worse. I know that it takes 3-6 months before hydroxychloroquine works but I expected to see some improvement from steroids by now.
Also what are people's thoughts on my ME being SLE all along, does anyone have both?
Do people get worse in Summer? I was bed bound for most of spring summer last year and felt an improvement in aug till nov then got I'll again.
I've been reading your posts and many people talk about flares can anyone tell me about these and how often they have them?
I know everyone is different and I can't compare my illness to someone else's but I was just wanting to hear other people's experiences.
I am sorry I have so many questions and don't wont to bombard you with them but I would really appreciate any help or advice anyone has. This is such an isolating illness and feel so alone at the minute. I can't seem to find any support groups in my area (Durham).
Many thanks for reading my moans