I am wondering what other peoples experience has been as you progress through medications.
Since SLE diagnosis 8 years ago have been taking 5mg prednisolone Plaquenil and cocodamol 4 x a day, for the joint stiffness and pain. I also have fibromyalgia and ostero arthritis causing pain. Sjogrens -dry eyes- and ulcerative colitis under control.
I bruise easily and get blood blisters on the roof of my mouth, which I wonder is thinned skin? Red cells large and B12 is low according to some but just in official 'normal' range. I am now in a lot of constant pain, stiff joints and muscles, so the question to the registrar next Tuesday, who is always different and never a lupus expert, is if current meds not as effective as before, what medication could I try next? I am concerned about long term steroids, I don't have major organ involvement and it seems unusual to be permanently taking them, the high dose of codeine, which I am now addicted to (GP's words) works to 'lift' me out of the pain, but is it really OK long term? Does anyone have more informed opinions from better informed doctors? Is an immunosupressent normally used if Plaquenil is not enough ? Are they 'safer' than steroids? Does increasing the Plaquenil help? Does anything actually take the pain away? This month could be described as a flare as it is worse, but I am never actually pain free.