Hi Everyone, I am new to this site but not new to RA. I was diagnosed in 2013 when I was 31 after suffering for a year with painful swollen joints. I am in NZ and under the public health system here, which for the most part has been excellent but as such I don’t think I can change Rheumatologists.
I am sero-negative and my RA is pretty well controlled. I have been through a lot of meds though, started on MTX orally then switched to sub-q but the nausea remained so my Doc put me on leflunomide which seemed to be working, unfortunately I developed a rash and terrible itch so had to come off that. Sulfasalzine gave me headaches. I am now on hydroxychloriquine.
I have had hip pain in my right hip of a few years now, it was always there but I put up with it, I managed to exercise well enough and ignore the pain, when it started getting worse I mentioned it to my Rheumatologist every time I visited, he would examine me and move the joint around, which I had told him never caused pain, it was sitting for long periods or waking in the morning that was worse. Eventually I felt like he got sick of me going on about it so said he thought i was caused from being very flexible and the tendons had stretched. This sounded like a cop out to me, if that was the case then half the population would have the same issues!
In October all of a sudden my left hip began aching too. I was on a car trip through the South Island so did a lot of sitting in the car, which was like torture. Getting up out of the car was very painful,I couldn’t stand straight for the first few minutes as the hips felt tight lie the skin and muscles were going to break. I put my self on a course of prednisone which cleared it up and cleared up my sore toes that had started hurting at the same time. However as soon as I came off the prednisone the hip pain returned. It got worse, I couldn’t lay on my sides in bed as they felt bruised and I wasn’t sleeping well. So I took myself to my GP and told him all of the above. He was so kind and said he knows when someone is just complaining and he could tell I was not one of those so when I said it was affecting my life he believed me and he was sorry I felt like my Rheumatologist didn’t. Sadly as it was out of his expertise and he sent me to my Rheumatologist and put me back on 15mg of prednisone and celebrex.
It seems all my rheumatologist is interested in is my bloods, and they are normal therefore it can’t be that bad. I feel better on the prednisone and celebrex so he wants me to see how I feel on 7.5mg a day and if it is good leave me on them permanently. This isn’t something I want to do, I am hungry all the time, and gaining weight and I know they are not good for you long term. I don’t qualify for biologics and I get that, there are people worse off than me and the government has to prioritize spending but surely there is something else I can do?
Does any one else have hip pain like this? What do you do? Do they think it is your RA or something else?
Sorry for the long post, I would just like some advise from fellow RA warriors.