Hi everyone. This may be a long post so please bear with me.
I've had lupus for 35 years and have been on prednisolone on/off for all that time. Main symptoms being joint/muscle pain, chronic fatigue and migraines. In 2013 (I wasn't on prednisolone at the time). I was diagnosed with fibromyalgia/cfs, and the quality of my life took a massive nose dive. So much so, that I had to use a wheelchair outside of the house. In 2018 my lupus flared up and I was put back on prednisolone. Despite the lupus flare, in time I did start to see an improvement in the my quality of life. And after about a year I even stopped using a wheelchair.
But everytime I tried to wean myself off the steroids, my lupus would flare up, and for a few years it was just a vicious cycle. Then covid happened and also sadly my consultant passed away. It took a couple of years for the Rheumatology clinic to restart, so I stayed on the steroids and I was ticking along (not plain sailing) reasonably well. Once the clinic restarted, I was seen again,(new doctor) I voiced my concerns about coming off the steroids. It was decided I would be referred to Endocrinology for a short synacthen test, to check my adrenal glands.
Conclusion: my adrenal glands are slightly surpressed, but functioning well enough for me to come off steroids and my lupus is stable enough to come off the steroids. Great news!!! You say.
BUT I'm scared to come off my steroids completely, because I think 3mg of prednisolone just keeps me ticking along nicely. But at the same time, I'm worried if I stay on the steroids, my adrenal glands may be suppressed even more, in time and then that's another problem to worry about. Any advice/thoughts are welcome.
Results of the short synacthen was 373 nmol/l