After six weeks of really struggling, my GP finally agreed that I could have yet another course of steroids.
I feel like a new woman!!! I can stay up past 7pm, my joints and chest don't hurt so much, the ulcers and rash have calmed down and my hair isn't falling out as much. Oh and i have rediscovered my brain!
However when I explain to my specialist how much difference the steroids make and that I have probably had 8 courses in the last year he says that I can't stay on them permanently and that he wants me to try methotrexate on top of hydro and mepacrine.
I know steroids have their side effects, irritated stomach, sleepless nights, weight gain but they are nothing compared to the way i feel. I also thought that methotrexate would only help my joint pain.
I just wondered how many of you are on permanent low dose steroids?