It took me 7.5 yrs to get my lupus diagnosed, which finally happened last October. However it started to get a lot worse last August, that was when the chest pain started. My first rheumatologist wasn't much help although he did start me on Hydroxychloroquine 400mg a day, this helped a little.
I'm a dressage rider so need to be out and about doing the horses every day. My rheumatologist wasn't interested in that at all and was no help, so I asked to be refered to Guy's hospital Lupus unit. They have been great and have listened to everything and really tried to help. However it's still not under control. They have said I have mild lupus as in no internal organs are involved but my skin and muscles are. I know that is good news, but not when you ride to a high level. For me it's devastating, my left hand and leg are getting weaker and I'm in quite a lot of pain my left hip and leg! I struggle to hold the reins and my left leg doesn't always do what I think it's doing (strength wise).
Last appointment I had at the end of July I was really struggling to walk as my hip was so bad. I was given an injection of 125mgs of Depomedron and said to up my Hydroxychloroquine back to 400mg a day as it had been lower in March. Injection was meant to last 3-4 months. It lasted 3 weeks 😔. I had to go to the Dr and get a course of steriods for 14 days. 😐 I just feel like it's never ending.