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@sstine

Hello! I have not been diagnosed by an MD. Two separate rheum work ups missed it although I had the symptoms and the positive labs. A friend sent me info on Pmr and I sent to my pcp. He will redo my labs and sed me in two weeks. The kicker was I was going to pt for my symptoms and finally saw a shoulder doc as pt was not helping and I could not do much with my arms. He gave me a shot of 80 mg and I woke up the next day almost completely normal. I had symptoms in my knees shoulders buttocks wrists and feet which began about 11 months ago. Debilitating. Before I got the Pmr info I had another 80 mg injection in the other shoulder as I still had some/guarding and restriction. I live in a medium sized city with not great healthcare options. I am about 45 minutes from Vanderbilt and want to go there. Should I see rheum again? What opinions on the doses I have already had that were 6 weeks apart? Thank you for any info. Thankful I found this group

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Replies to "Hello! I have not been diagnosed by an MD. Two separate rheum work ups missed it..."

Hi there- So sorry you’re going through this, and I hope you find answers soon. You’re not alone in going around the rheumatology spin cycle as I call it. I have a different inflammatory arthritis and something similar happened to me—months of PT while joint and tendon pain got much, much worse, several referrals, and multiple rheumatologists before I got the correct diagnosis.

The symptoms do sound like PMR, but there are many conditions that have similar symptoms. Typically it would be diagnosed with a combination of your symptoms, elevated labs (ESR and CRP, though confusingly these inflammatory markers aren’t always elevated), and if there’s uncertainty, a trial of oral prednisone.

Did you have steroid injections into your joints, or something else? That would temporarily help any type of inflammation. It’s non-specific, as it might improve PMR symptoms but also symptoms of other conditions as well.

The first line treatment for PMR is oral prednisone.

I think it would make sense to see a rheumatologist if you’re able—if you feel comfortable talking with those who you feel missed the diagnosis, you might still be able to talk to them about your suspicions about PMR. If so, it may be a shorter route to treatment, given how long waits can be for new patient appointments in rheumatology. But if you don’t feel comfortable, it may be better to get another opinion.

PCPs can treat PMR; it seems to vary depending on the PCP’s comfort level. I’m glad you can go to your PCP for support. But if there’s a possibility it could be something else, or if it is PMR but you have challenges with the prednisone or tapering it…that’s where you’d most want the expertise of a rheumatologist, if things start to go a little sideways.

It depends on what you’re comfortable with. I’d take the path of least resistance to treatment and then figure out where to go from there.

My dad’s PMR symptoms were absolutely debilitating. We pressed and pressed his PCP to consider the diagnosis and try prednisone. If he hadn’t prescribed it, we might have just taken him to the ER because we didn’t feel we could wait for a rheumatology appointment, but finally the PCP came through. We got with a rheumatologist as fast as we could though. All the best to you, and hoping you get answers soon!