Change of diagnosis

I have been on this site for a year now. I appreciate all the information. Dadcue and megz you are a blessing to share. It makes me feel lucky knowing what you guys are going through. Good luck.

I was diagnosed with Antiphospholipid syndrome 20 years ago and my arthritis doctor prescribed it, along with methotrexate. The symptoms (swollen legs, red,
Painful lumps on my legs), among other things, all disappeared within a week.

My adventure began with PMR successfully put into remission after one year prednisone. A year later I had a flare up and new blood work was collected, this time being positive
for mixedConnective tissue disorder. I was treated with Plaquenil (no side effects) for about 2 years and again went into remission. Six years later and I flared up again with PMR/seronegative RA and back on prednisone with MTX and Humira. Both my PCP and Rheumatologist explained that PMR can be a precursor to other autoimmune disorders and you can “move back and forth” between them. So my blood work changed my diagnosis. Moving towards total pain relief. 😊

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.

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.

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.

"It's still autoimmunity with the same symptoms as PMR, but a bit more widespread."
-------------------
I said the same thing about reactive arthritis and PMR.

Reactive arthritis wasn't too widespread and mostly confined to my lower back and knees. Unlike PMR inflammatory arthritis causes damage to the joints. When uveitis gets involved it can cause vision loss.

My uveitis was an aggressive type and required a massive dose of prednisone to quiet it down but I could taper off quickly. The routine was 60 and up to 100 mg but back to zero in a month or two so "short term" prednisone. I had more than 30 flares of uveitis over 20 years until the flares stopped after PMR was diagnosed.

The flares of uveitis and inflammatory arthritis mostly stopped because I took Prednisone daily. The characteristic shoulder pain of PMR persisted for a couple of years but then it mostly stopped.

Unfortunately, the pain was still widespread when I didn't take enough prednisone. When someone asked me where it hurt my usual answer was "everywhere." That answer wasn't very helpful so I had to narrow it down some. Then I would say my shoulders or somewhere else hurt the most but it depended on the day.

All the pain was lumped together as PMR . Since I didn't have any uveitis flares and minimal back pain that was reduced to a "history of" reactive arthritis and uveitis but the labels were never removed.