Since I previously posted how nervous I was, I thought I'd let you know how I got on at my 2nd rheumatology appointment last week. Since ALL my bloods came back negative, I didn't respond to the prednisolone injection, and I haven't felt any improvement on the hydroxy in 4 months, I was worried that he'd say there was nothing else he could do, and I'd be left alone again with this awful condition.
Well he didn't dismiss me, he IS continuing to treat me. I still don't have a diagnosis, he's a connected tissue disease specialist and he's baffled, but he did say that even when there's no diagnosis for a long time, he always gets a diagnosis eventually. Hurray! I can stay on the hydroxy. Hurray! He'll see me again in 2 months not 4. Hurray! And if I'm no better then, I can move on to methotrexate because he's taking it seriously. Hurray!
That's great news - you have certainly struck lucky with your rheumy! I'm in similar boat and still waiting to hear back from my new rheumy about whether or not I have RA or UCTD or Lupus. He too specialises in connective tissue diseases. I do have a diagnosis of RA and my bloods are equivocal and I've tried four disease modifying drugs, including Hydroxy, and had bad allergic reactions to all of them so fear they might give up on me too. I hope not! X
So glad you have finally found an understanding & enlightened rheumatologist which makes a big difference. I found one at second attempt & now feel like I have someone on my side.
They are some really good consultants about, yours sounds very much like mine. It makes such a difference when someone believes you and is willing to help
Take care
I have to say I would never have seen anyone if I hadn't done my research and told my GP where to refer me. It's been 15 years of me going to my GP with the same symptoms. Since the biggest flare started 10 months ago I've been researching and pushing for treatment like it's a part time job. I'm glad I've found this Rheumy he seems intelligent enough to help me, but I know I will have to keep working on it, as I'm sure you know, there's no taking a back seat when it comes to these diseases is there?
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