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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Nov 18 7:12pm | Replies (1907)Comment receiving replies
My experience is constant pain, I have had a bit of a reprieve from time to time , but recently have had a horrible flare. My doctor wants to put me back on steroids, due to the long term side effects and that it really didn’t help with pain my doctor agreed. I feel my doctor is no longer a good fit for me so I am seeking someone new
I am riddled with pain, and very discouraged
Replies to "My experience is constant pain, I have had a bit of a reprieve from time to..."
Hello @dermnurse68 and welcome to Mayo Clinic Connect. I am sorry to hear that you experience constant pain. It sounds like you are a good advocate for yourself in that you feel you know when you may need to consult another doctor.
It sounds like you are not wanting to go back on steroids due to the side effects, so I am curious if you have other options in mind or if you are looking to see what another doctor may recommend?
I am surprised the steroids did not relieve your pain. I just had a flare up this past weekend and the doc put me on 15 mg for a week. I am already feeling some relief. It happens quite quickly. Are you sure you have PMR? Maybe itt is something else since the steroids don't work.
The pain is really terrible; I feel for you.
This is from a medical textbook on PMR and GCA (I am paraphrasing): There should be an immediate improvement in PMR and GCA within 1-3 days of taking steroids. If there isn't improvement after 5-7 days, an alternate diagnosis (infection, malignancy, hypothyroidism, etc.) should be considered. GCA (Giant Cell Arteritis) requires a higher dose of steroids than PMR so if the lower dosage of the steroid, usually prednisone, doesn't take away all the pain, a higher dose is needed to manage GCA.
Do you have pains or strange sensations near your temples, on your face, scalp, neck or have difficulty chewing? Any issues with your eyes, times when you can't see out of an eye? Any dry non-productive cough? The test for GCA is a biopsy of the temporal artery. It sounds scary, but it's not the worst procedure I ever went through.
Do you have current blood tests of your inflammation markers (sed rate and CRP)?
If there is a suspicion of GCA, it's important to act on it fast, as there's danger of stroke or blindness. Articles I've read suggest the physician not wait for the lab tests or results of the temporal artery biopsy and start the higher dosage of the steroid immediately, if GCA is suspected.
I hope that helps.
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My first Rheumy wasn't very good, but I got a different doc when he left, and he's excellent. Very up to date, and thorough. In our state there aren't many choices, but there is one good practice. It's really OK to even ask for a different doc within the same practice. Most docs aren't bothered by that. Just don't give up the one you have until you line up someone else. Often just a frank talk can clear the air with your current doc if he isn't too egoistic.