How long to get a diagnosis of PMR?

i was in the same boat 2 1/2 years ago--saw multiple docs, had sonograms and ultrasounds, etc. told it was tendonitis. got chewed out by nurse for "doctor shopping." unfortunately it wasnt until i was bedridden--and my esr shot up that i got the diagnosis. im in the us--it was an urgent care physicians assistant who finally listened and said, "i think i know whats wrong with you." and by then, my esr had shot up. if she hadnt figured it out, i was going to go to the hospital er.

you can go to a rheumy--but here it takes months to get in. i dont know whether the rules change as we age, its just that at least where i live, no one has heard of pmr. and if the esr levels arent elevated, which they often arent, diagnosticians are at a loss. there is a lot of information on this forum to help you in your defense. others will come along who are smarter than me. best wishes to you.

For me, it was about a full year, but my symptoms took a few months to fully develop. I first went to my GP with stiff shoulders and neck and a general feeling of unsteadiness (February), but by June it was the full on gelling (shoulders, hips, elbows and knees) and I was feeling pretty bad and could barely move. My GP arranged a pretty full blood profile including ESR and CP, which came back high-ish, and a radiological (gamma) bone scan, then referral to a rheumatologist. This all took a year to the following March. As PMR, although damned painful and restricting, has such generalised and non specific symptoms, it can take a while to narrow down to a diagnosis. I did not develop GCA, luckily. One rheumy thought it wasn't PMR, but he had incorrectly noted my symptoms, including not properly identifying the bilateral gelling I had, typical of PMR.

I'm not sure about the age question.

Ellie,

It took 8 miserable weeks here in US, and had to go through 1 incompetent rheumy, and finally my GP prescribed low dose prednisone, and much to the amazement of the ignorant rheumy, Treated! As it turns out, the confirmation of PMR or RS3PE is the rapid response to low dose pred.

I self diagnosed, by the way.

6 hours was my confirmation time!

Good luck

Also, keep in mind that in a good % of PMR and RS3PE, the results of blood tests are "negative"

FYI RS3PE is

Remitting Sero-negative Synovial Synovitus with Pitting Edema.

Briefly, it's PMR including HANDS and/or FEET. In my case, not extreme swelling, but, some.

Personally, I think the medical system is designed towards a more complicated diagnosis procedure than PMR requires. For 4 months prior to diagnosis I was taking maximum daily doses of Tylenol and/or Ibuprofen with virtually no effect. It was a physician's assistant prescribing 7 days worth of Prednisone 15 mg that did the trick. Within 24 hours I was having relief. I would think that prednisone early on should be part of the procedure to determine if a person has PMR or not. Seems to me that's the last thing that's done for many people, after all other alternatives have been exhausted.

Forgot to say as far as I know, "the rules of treatment" are the same regardless of age. PMR is still PMR.

I must have been back and forward to my GP for at least four months. Was told it was a virus, a long term one! I went to a rheumatologist privately in the end who diagnosed it in about five seconds.

IN MY CASE the symptoms gradually increased from bilateral hip bursitis treated with steroid injections to bilateral shoulder bursitis. The doc treating my bursites( we had worked together professionally for over 10 yrs) thought I might have an inflammatory condition. We tried curcumin for 1 month but I continued to worsen. Around that time I took my annual flu shot and the second recommended pneumonia vaccine. About 6 days later I felt really ill with a daily afternoon low grade fever and the usual terrible pain on trying any simple activity. I searched the scholarly medical literature and came up with PmR . My family doc drew some bloods which showed anemia and elevated sed rate. He said my anemia must be from some gastrointestinal tract bleeding caused from the naproxen I was taking. He diagnosed me as having fibromyalgia and rushed me out the door with no further recommendations as if I was some type of a nut case. I self referred to a rheumatologist who examined me and prescribed pred with great results in a few hours. MY c-reactive protein was 111(!). I also underwent the upper-lower GI SCOPES - no source of bleeding was found. My gastro said the anemia of PMR abates with pred and it did.

THIS was in 2015 when I was 73.

The trick is finding a knowledgeable physician.

The length of time to diagnosis is totally dependent on your health care system and I hate to say it...the whim of your treating physician. You will find people here that were diagnosed correctly within days, other within any number of years.

The best advice I can offer is find another physician.

Sorry to be so blunt. Others may have more suggestions.

Wishing you the best in getting a speedy diagnosis and treatment plan.

It took me 5 years to get a diagnosis - and I made it myself in the end! The GP had told me it was old age - in my early 50s!

What do you mean by PSA levels? Or are you male?

You can insist on referral if you are in the UK - whether they will comply is another matter. And whether the rheumy will be any better is a bit of a lottery I fear. Do you not have a choice of GPs in your practice? Mine usual one was useless but had I toured the practice I'd have been diagnosed much sooner. And rules of management for ANYTHING should not be based on age alone. PMR is often found in people in their 70s - some doctors even tell younger patients that only people in their 70s get it. Though some prat told someone recently they were too old to have PMR ...

Ellie,

There are two blood tests – erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) – that are typically used to check the levels of inflammation in your body and are the best to diagnose PMR. This said, by the results of these tests, my internist said I was very borderline but I should see a rheumatologist. He did give me a 6-day test packet which upon memory started at 20 mg prednisone and went down to zero and after the first day, I was remarkably better and by the end of the 6th day I said this was no big deal. WRONG!

I decided to just tough it out and it came roaring back. When after several months of just treating my shoulder stiffness and pain with Ibuprofen; which then spread to my arms and then wrists, and upper legs, I tried getting into to see a rheumatologist and that took over a month before getting in. He confirmed the diagnosis and now about 8 months after first symptoms, I'm down to 9 mg prednisone, reducing 1 mg/mth for the next 2 months.

I'm 72 just about 73.

I had been to all sorts of doctors over many years. I moved house and went to a new G.P about something unrelated. She asked why i were stooped and walking funny, I fobed her off, but she persisted with the questions and blood tests. She sent me home on 20mg of Prenisone, that day. Oh the joy by that evening. i could stand up straight and walk without limping and without pain everywhere. She rang the next day and gave me the diagnoses of PMR. That was 2015. I have got down to 1.5mg in this time but I am more suited to 2mg. If I forget my morning dose I have all my usual pain back by the evening. That is a reminder to never forget. Enjoy your pain free times