Well here goes, I was first diagnosed by my GP, given steroids (40mg) and referred to the rheumatologist who confirmed her diagnosis and even though I had dropped to 20mg due to being so hyper he then recommended I reduce gradually by 1 mg per month so 19 months on I should be steroid free. Now on 4mg but experiencing more side effects than I have ever done, weight has gone up by over 20lbs in 3 months despite 5 exercise glasses per week. My legs are twice the size through fluid, I have even bought larger shoes (4 pairs) I have had no contact with my doctor for 6 months, no monitoring of my condition and my last blood test was 8 months ago. I reduce and increase on my own, I even let the pharmacy know how many of the 1mg and 5 mg I need for my repeat prescription. Trying to get an appointment to see my GP is a total nightmare on my last call I was informed I can have one in 2 weeks, but I am away then. Any suggestions re the increase in side effects would be gratefully received as I am just going to self medicate and self care till I have reduced to zero..