Hi, I have been diagnosed with SLE 7 years ago but had a really bad time with it for the last 2 - 3 years. I have been on prednisolone fluctuating between 10 - 40mg a day for about 2 years due to bad flare ups causing major fatigue, high fevers, joint pain, unbearable cramps on shoulders and neck, headaches and tenderness on skin. So when I have a major flare up, doctors put me back up to 40mg and then when stabilised, we start weaning down to 10. Almost always when I get to 10, I get a major flare up within a week and I am back in hospital. Then after several admissions into hospital, I was approved to go on biological infusion Rituximab back in October 2016. It has been about 4 months now since the infusions and blood tests show that Rituximab is working and so we have started weaning off the steroids again. Good news is that I managed to get down to 10mg and have stayed at this level for the last 2 months without any flare ups however every time we try to go below that (ie 7.5mg), I start feeling the pains again and slight fever. Ok, so it is not the full spread of issues but now I am just frightened to go below 10mg as don't want to get a major flare up and start all over again on a high dosage of steroids. My rheumy seems to think I shouldn't need another set of infusions because my white blood cell count is already so low.
Has anyone else had this issue of weaning off steroids or have any tips / success stories? I have been reading other forums (written by people with other conditions but also use steroids for treatment) and they have also complained that once they get to a lower dose they get cramps and joint pain - they have been told by their doctors that this may be steroid withdrawal symptoms. So in fact perhaps I have been getting steroid withdrawals and not a flare up but I can't tell because it is so similar to my SLE symptoms. Also, there is a possibility that my adrenals aren't kicking in for my body to produce its own natural steroids - does anyone think this can be the case and if so, is there anything we can do to make sure our adrenals kick-starts itself properly?
Sorry this is such a long and rambly post - it is a result of both frustration and confusion!! Hope there are a few of you out there that can relate or have some comments.