Comprehensive Overview Of PMR

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

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.

Have they tried prednisone? I have read that occasionally the fact that steroids work is the only diagnosis.

Some people would say a rapid response to Prednisone confirms the diagnosis of PMR. This may be true if all the other diagnostic possibilities have been ruled out. However, there are literally hundreds of conditions that may respond rapidly to Prednisone.

You have been M.I.A. lately. How are things going?

"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.

yes. Thanks for asking. My wife passed in Nov. I have been a 4 year caretaker. I had hoped the added stress would not flare my PMR. It appears not. I believe her health and my getting the covid shot contributed to my PMR. I developed a shooting pain in the nerve at the top of right hip joint. But I have been able to maintain without steroids. So my supply of dexamethasone has dried up. Although I have stockpiled quite a bit. I might need to move to a grief share site. 🙂

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.

yes. Thanks for asking. My wife passed in Nov. I have been a 4 year caretaker. I had hoped the added stress would not flare my PMR. It appears not. I believe her health and my getting the covid shot contributed to my PMR. I developed a shooting pain in the nerve at the top of right hip joint. But I have been able to maintain without steroids. So my supply of dexamethasone has dried up. Although I have stockpiled quite a bit. I might need to move to a grief share site. 🙂