Comprehensive Overview Of PMR

Some good information in that vid. I'm never comfortable when drug companies are named as sponsors though.

Interesting that 20mg of prednisone/prednisolone (in Australia 15mg) is given to start treatment for PMR and is supposed to be effective at that dose. At 21:07, he says "The need for higher doses of steroids [more than 20mg] goes against the diagnosis for PMR." Yet quite a few people here say they started at higher doses. Are those doctors over-prescribing or is the PMR diagnosis wrong?

The proposal in the vid that people should be fast-tracked to a specialist to confirm diagnosis before starting prednisone is a nice idea, but in Australia at least, we have a shortage of rheumatologists and long wait lists to see one, sometimes a couple of years. I was referred to a rheumatologist in September and got a letter saying they received the referral and they'll write again when I'm on their waiting list. Four months later, no word. Imagine if everyone had to wait in pain for that long, and imagine the inflammation damage which would likely be caused by such a long delay in starting effective treatment.

"The proposal in the vid that people should be fast-tracked to a specialist to confirm diagnosis before starting prednisone is a nice idea, but in Australia at least, we have a shortage of rheumatologists and long wait lists to see one, sometimes a couple of years."
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We have that problem in the USA too. Depending on where you live, you may have to wait a few months and travel 100 miles to see a GP --- never mind seeing a rheumatologist. I think the wait to see a rheumatologist might be within a year though.

I live in the rural state of Iowa. We don't have any large cities where most of the specialists practice. Fortunately, in the town where I live there is a 1,000 bed university hospital with all the specialty clinics that serves the entire State of Iowa. I would prefer to see one rheumatologist at every visit. However, if I'm flexible, I can be seen by any of approximately 20 rheumatologists.

I don't know what was so special about me recently having gout added to my list of rheumatology problems. Six rheumatologists came into my room to talk about it. Two experienced rheumatologist were discussing my history and were overseeing the training of the other ones.
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"The need for higher doses of steroids [more than 20mg] goes against the diagnosis for PMR." Yet quite a few people here say they started at higher doses.

I needed a lot more than 20 mg of Prednisone for a lot longer than PMR is supposed to last. I think for isolated PMR cases 15-25 mg should be enough but that assumes you don't have any other conditions. I remember the rheumatologist who diagnosed PMR being incredulous that my inflammation markers were still elevated on 30 mg of Prednisone. She recommended 35 mg as my starting dose. I asked the same rheumatologist 10 years later if I still had PMR. She insisted that PMR was still my primary diagnosis but acknowledged there were other things going on.

I think the primary indicator is how I feel. Started at 15mg of prednisone 6 months ago and my inflammation was way up 30 to 40. It dropped to 4 and last couple checks it was at 14 or so. I have roller coaster down to 6mg of prednisone now and plan to do 1mg drop at 4 week intervals. And continue to exercise and dance to build my muscles back up. Male 65 years old. Currently I am feeling pretty good. As long as I am feeling good I don't feel the need to get my inflammation checked again. Bigger complaint is stiff sore weak hands but that is not consistent, and better by end of day.

I was diagnosed with PMR by an Internist after 30 specialists could not determine the cause of my muscle and joint pains in my legs and hip. I have OA but that was not considered to be the primary cause of all of my severe pain. I have had x-rays and a plethora of lab work; I have been seen by 3 rheumatologists-orthopedists-neurologists-infectious disease-and two vascular doctors. The vascular team has NOW run multiple tests and states the swelling in my legs is not vascular but lymph edema. No one knows the cause of the lymph edema. Abdominal U/S was normal. How do I know if I have PMR and can PMR cause lymph edema. The vascular doctor told my internist to stop the Prednisone. Cardiac testing is normal. Liver and kidney are normal. I am in severe pain. Any suggestions for pain control. The orthopods don't want to have a hip replacement with the severe lymph edema causing terrible pain in both legs; muscles; joints; and knees.
Hope someone has a suggestion. On opioids for pain with minimal help. Now going to PT for lymph edema treatments which are not doing much.

I wrote my symptoms on Google and came back with PMR. I could not even remove the covers off me to get out of bed. I had very typical PMR symptom. After the 3rd day of suffering like hell, I happend to have Methyprednisolone in my house from an earlier knee problem. I read the average prescription for PMR on the the internet. I took 3 4mg pills of methylprednisolone and within 1 hour I had a magical response. Of course, I didn't have enough pills to last more tha 5 days and was lukily enough to see a rheumatologist who had a cancellation. Otherwise the earliest next appt with any rheumy was more than a month away. I am doing quite well with methylprenisolone which I have found to be more effective than ordinary prednisone. I had my first decrease to 12 mg of methypred (which is a bit stronger than regular pred) 4 days ago and am doing very well. I have no PMR symptoms since my 1st taper to 12mg.

How do you get rheumatologist to stop prednisone and switch to Methyprednisolone?

I too had the same response to methylprednisolone! However, I have had a relapse this year and I have suffered with spine pain. Nothing seems to help, im on another course of prednisone, and there is a big difference between this and the methylprednisolone. I tapered down to 5 so far, and will continue to taper anyway.

Glad to hear someone else had the same feelings as I did using methylprednisolone. I am sorry for your relapse. I am not far into PMR. I just started taking the 16mgs methylpred on December 7th and and on January 7th I tappered to 12 mg with no side effects. I am basically symptoms free except where I unwillingly took the flu vaccine in my left arm on Nov 27th. Every morning my vaccinated arm still hurts. The left arm pain disappears a few hours after I have taken my 12mg methylpred. I had had a laminectomy in 2020 and that helped with my spinal pain.

Hello all and @dadcue - it's snowy today so was able to watch the video. One thing that caught my attention was the mention of an 'aggressive taper ' that he says is worth a try ! Well I remember seeing this before - sure enough I posted this almost a year ago :
https://connect.mayoclinic.org/comment/1012486/ >> see the mention of a rapid taper to zero mg by month 4 = 16 wks. Dr Sattui was previously at Hospital for Special Surgery in!! Interesting - is this only a NY thing ? the city that never sleeps LOL I also think there was a Connect member ( maybe there are many others here?) who was /are using a rapid taper . I,m going to link this one of the recent conversations about tapering !

"Sebastian E. Sattui MD, MS, is a rheumatologist and is certified in rheumatology and internal medicine by the American Board of Internal Medicine. He received his medical degree from Universidad Peruana Cayetano Heredia in Lima, Peru and completed his residency at University of Alabama at Birmingham, followed by his rheumatology fellowship and advance rheumatology/vasculitis fellowship at the Hospital for Special Surgery/Weill Cornell Medicine.