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megz, are you saying you were misdiagnosed or that pmr is now gone and it perhaps evolved, if that's a good word, into a connective tissue disorder?
I was offered plaquinil but after reading about side effects, I decided to say 'no'. There is some remote chance of a retina problem. I already have a retina problem and thought it would be tempting fate to try it.
Rheumatology does not think my pmr is active but I am holding at 3mg til next appointment in Feb.
I am very stiff, not exactly what I would call painful, first thing in the morning and if I sit for any length of time. It wears off quickly and is best to keep moving. It does not seem like pmr, at least not like when pmr was first diagnosed.
Thanks for sharing your journey.
Replies to "megz, are you saying you were misdiagnosed or that pmr is now gone and it perhaps..."
I don't think I was misdiagnosed with PMR in May 2023. Back then I didn't have Morton's neuroma, Raynaud's syndrome, trigger finger or a rash. They came last year following a flare. Diagnoses aren't always clear cut. I got the impression that my new diagnosis might have been Lupus if I'd answered a few questions differently. Lupus was certainly mentioned.
Connective tissue disease just means it affects more things than the usual PMR places in the body. It's still autoimmunity with the same symptoms as PMR, but a bit more widespread. I did say to the rheumatologist that it must be hard trying to put all these autoimmune conditions into neat boxes with certain names when so many autoimmune symptoms overlap and no person has exactly the same disease as another person. He gave me a glazed blank stare with no reply. 🙂
I share your reservations about Plaquenil (hydroxychloroquine). There's no hurry for a decision on it so I'm keeping an open mind at this stage.
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I think the problem is more about what label is attached to autoimmune conditions. I have been labeled with multiple autoimmune conditions. When I asked my rheumatologist what condition we were treating she said PMR was my "primary diagnosis" complicated by other conditions. Otherwise she would talk about "systemic inflammation" compared to inflammation confined to one location.
Lupus is a "systemic autoimmune disease", meaning it can cause inflammation in nearly any part of the body.
My inflammation is systemic in the sense that my inflammation happens in many places but not everywhere. When PMR was diagnosed, I had the stereotypical characteristics of PMR such that I couldn't lift my arms. It was a new symptom unlike anything I had experienced when my primary diagnosis was reactive arthritis with uveitis.
My diagnosis of PMR was delayed because my previous label of "reactive arthritis" had already been placed on me. My new symptoms didn't fit the label of reactive arthritis. What is a rheumatologist supposed to do? My rheumatologist put another label on and called it PMR in addition to reactive arthritis. Other rheumatolgists might take off the original label and put a different label on.
A label is important because it dictates the approach to treatment. I have several more labels now. Too many labels makes it hard to treat. My rheumatologist admits that it would be impossible to adequately treat everything.