Well I’m struggling! About 3 years in on this journey and on 12mg of pred and 400mg of hydroxychloroquine from original start of 15mg of pred only. Lots of ups and downs along the way. I haven’t felt the initial relief I got with 15mg of pred for quite some time now which is very frustrating. Don’t get me wrong I can do a lot more these days but am in constant pain in my hips, sleeping is problematic to say the least. Driving for an hour means I’m very stiff and struggle to walk for a minute or two. I have written to my rheumy and he replied that he hasn’t anything he can suggest to me although he’d be happy to discuss it in clinic. I’m not sure I see the point in this other than handing more money over!
So I’m at a bit of a loss, he has had me try quite a few different steroid sparingly drugs which either made me ill or made no difference.
What should I do? I don’t want to increase the preds anymore but also can’t see how I’m going to get any lower!
On a positive I suppose, I don’t have brain fog and no longer have the same level of “I can’t be assed to do anything”.