Anyone had a similar experience?

This happens way too often. I had been diagnosed with Sero negative RA in 2012 and in 2019 I moved to NC and got a new Rheumy. I was on Enbrel but it was no longer effective. That brand new doc told me
I only had osteo because my joints weren’t swollen enough and he took blood to run a RA Factor test and lo and behold I was positive! My hand zrays have never been terrible either. One or two tests don’t tell the story.

Yes, I suppose you are right. I guess I’ll have to forfeit my membership in the PMR group.

Hello @copeterson, My PMR is currently in remission but I've had two occurrences of it and what you have described doesn't sound anything like my PMR symptoms. There are quite a few conditions that have similar symptoms and can mimic PMR. I'm not sure if you have done any research on them but here is an article that discusses conditions with similar symptoms:
--- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica.

I know it can be discouraging to say the least when your rheumatologist tells you the PMR diagnosis may not be correct and they think it's just osteoarthritis. Have you read anything about Fibromyalgia and it's symptoms? It's one of the other conditions that can be misdiagnosed as PMR. Here's some more information that may be helpful.

"Because of their apparent similarities, it's possible for PMR to be misdiagnosed as fibromyalgia or vice versa. It's also possible for either condition to be overlooked in someone who's already diagnosed with the other.
These two conditions, however, are very different and require different treatments. Knowing the symptoms of both can help you recognize whether you may have a new or undiagnosed condition that needs to be addressed."
--- The Difference Between Fibromyalgia and Polymyalgia Rheumatica: https://www.verywellhealth.com/fibromyalgia-polymyalgia-rheumatica-know-the-difference-3973011

Started out with neck pain with minimal stiffness. Also felt some tingling in the hands. Neurosurgeon consultant performed a minimal
physical exam and CT scan showed some cervical space narrowing and arthritis. Went for physical therapy and it helped the pain but numbness in the hands recurred. Was hiking with a physician friend and he said I think you have carpal tunnel. Sure enough EMGs were definitive for bilateral carpal tunnel. Surgery successful and no residual symptoms. I still do my PT exercises.
A year later I developed PMR acutely after a strenuous European vacation.
Seronegative and high sed rate and CRP. Responded nicely to steroids tapered over 14 months. My very mild psoriasis was all clear but my first rheumatologist raised the possibility of psoriatic arthritis and suggested
watchful awareness before she moved on to academia and administration
with 3 children at home. Developed tendonitis and morning stiffness of my hands and back. Next rheumatologist heard my story and diagnosed osteoarthritis in spite of my history. I presented her with a very positive
psoriatic arthritis screening questionnaire and diagram of all my positive
joints and tendonitis. Still was told I had osteoarthritis and use NSAIDS.
Felt gaslighted and now have a very thorough,helpful rheumatologist at the University of Chicago who diagnosed my psoriatic arthritis managed well on Humira. Axial arthritis and Enthesitis now minimal.
We can have very minimal psoriasis of scalp with nail involvement and be
more likely to develop PsA. Up to 40 percent of PsA patients may have carpal tunnel. I also learned it increased my risk for cardiovascular disease.
Keep probing and educating yourself. Doctors and tests are not perfect and diagnosis may take a lot of persistence.

@seniormed

Your story has some parallels to my story. I was diagnosed at the age of 32 with reactive arthritis (ReA) which is in the same family as psoriatic arthritis (PsA). You and I would probably have much to talk about.

My "inflammatory arthritis story" is separate from my "PMR story" but the two stories intertwine. I never had any difficulty being diagnosed although my longstanding diagnosis of ReA probably delayed my PMR diagnosis for a few months.

In addition to ReA and PMR there was "premature osteoarthritis" but that was attributed to sports injuries in high school. I was told a knee replacement was needed when I was 25 years old except I had to wait until I was 65 to do a knee replacements.

There was a short delay to being diagnosed with ReA arthritis while a surreal sequence of events unfolded. The events began with an enteric infection following a trip to the Romanian orphanages in the early 1990s. The conditions in those orphanages were deplorable. I came home with nausea, vomiting and diarrhea. My enteric infection resolved quickly so I didn't see a doctor until the impossible to explain back pain began. It was very strange back pain. In my opinon, there was no rational reason for that kind of back pain.

I sought medical treatment for back pain that was excruciating at night but minimal during the day. The medical advice I received was "get a new mattress" and take ibuprofen. The ibuprofen caused GI problems and out of control diarrhea so I got sick again.

One thing led to another until I showed up in the emergency room severely dehydrated and nearly dead if you ask me. I was thinking I had a stroke because, following a prolonged retching spell, one eye was "fixed and dilated." My dilated right eye was reacting normally to retching. It was my left eye that wasn't dilated that was abnormal. The pupil in my left eye was "stuck" and wouldn't dilate.

Fortunately it was my left eye which precipitated a quick diagnosis of reactive arthritis. I had an aggressive form of uveitis which is associated with reactive arthritis. If I didn't have uveitis, I probably would never have been diagnosed. An ophthalmologist gave me a bunch of "little white pills" but he didn't tell me what the pills were. My ophthalmologist only said the pills would help the inflammation inside my eye.

When an internal medicine doctor diagnosed ReA he asked me if a group of medical students could examine me. I had small lesions on my feet, in my mouth and on my privates. The internal medicine doctor wanted the medical students to see all the lesions because they were symptoms of ReA along with uveitis and unexplained back pain.

My treatment for reactive arthritis was sulfasalazine. I had a follow-up visit a week later and announced that I was "cured" because the back pain "went away." My doctor was happy but said sulfasalazine wouldn't have worked that quickly. He was unaware of the little white pills (prednisone) given to me by the ophthalmologist.

Reactive arthritis flares have a way of recurring so the back pain didn't go away and neither did uveitis. Recurring flares of uveitis happened regularly for the next 20 years. The back pain was a problem as well but, all the pain went away when my opthalmologist treated every flare of uveitis with high doses of prednisone. I didn't think I needed any medical doctors.

I was "doing well" because prednisone made everything tolerable ... even trigeminal neuralgia. Mercifully, a neurosurgeon eventually did surgery to finally stop the pain from trigeminal neuralgia from happening.

I always had leftover prednisone to take when I needed it because of the massive amounts of prednisone that my ophthalmologist prescribed for uveitis. I listed my ophthalmologist as my primary care doctor.

After 20 years at the age of 52, I was referred to a rheumatologist because of rapid onset severe shoulder pain while pain and stiffness spread all over my body. I could hardly move and I didn't have any prednisone to take. I thought not having any prednisone to take was the problem!

My PMR diagnosis is another long story. I just want you to know that having PMR, ReA or PsA, uveitis, along with "other things" including osteoarthritis are all possible and can coexist in one person. I would have preferred one diagnosis that explained everything though.

After all the prednisone side effects (too many to mention) are added into the mix with everything else it all leads to a "complicated medical history." Side effects from a long list of additional medications to treat prednisone side effects also contributed more problems and made my entire medical history more complex.

I am doing well currently ... my rheumatologist started me on Actemra about 4 years ago. I got off prednisone after 12 years of PMR treatment.

I still need prednisone occasionally for uveitis flares but I only take a high dose of prednisone intermittently for a month or two for uveitis. I can taper off quickly because my adrenal function is no longer suppressed by long term prednisone.

The only thing currently pending is surgery for severe spinal stenosis caused by "osteoarthritis." I'm convinced the cause of arthritis , whether it be "wear and tear" osteoarthritis or chronic inflammatory arthritis, is hard to distinguish as we get older.

The nice thing is, I don't need anything for pain even though my primary care doctor says Actemra isn't a pain medication. She asks if I'm sure I don't need something else. I have stopped nearly all my other medications that were primarily used to treat prednisone side effects.

By the way, Humira didn't seem to work for me as well as Actemra did.

Sorry for such a long story that I just wrote. Things got extremely complicated and sometimes it is hard to explain everything in just a few words.

Believe it or not, my rheumatologist praised me for being "concise" and "a man of few words." I didn't share so much with her but we got along extremely well because of that. She would say I asked pertinent questions except she couldn't answer my questions most of the time. I appreciated her honesty and I never felt gaslighted.

No apologies necessary. Thx for the response.

:). No but to be fair you may not have PMR either. I’m just saying that PMR overlaps symptoms with several other conditions and because of that, one or two tests may not deliver the magic answer.
You mentioned taking Prednisone in the past. Did that not give you relief?

LOL. Some stories have layers or they don’t make sense. 🙂

@seniormed could I ask you about your reference to nail involvement? I’m not sure what that might mean but I have RA and have had a rather sudden deterioration of my nails - so I thought I’d ask what you meant.

Our fingernails can be involved in
inflammatory diseases and contribute to diagnosis of psoriasis and arthritis. Ridges,
lines, pits and discoloration with scaling and thickening or deformity can evolve and indicate disease activity. Systemic illness can cause growth change and deformity.Changes in our cuticles and nail root occur in some autoimmune conditions. My thumbnails tell me my psoriasis is ever present,