Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

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

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.

Hi GCAP, PMR is an autoimmune disorder and there are warnings on all products that contain melatonin not to take if you have an autoimmune disorder. There were some previous posts about this you may want to check out.

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.

Finally got to see rheumatologist yesterday after 3 months of increasing joint pain and exhaustion. I’m alarmed by the dosage (40 mg) of prednisone he put me on but already feel better this a.m. I’m waiting to schedule my Biopsy of temporal area (suspects I have GCA) due to my increasing sed rate, scalp tenderness and high C-RP rate. If it is GCA, then he says he increases prednisone to 60 mg. These amounts sound so high compared to everyone else’s amount of 10-20. Anyone else just get started on these high mg? I have osteopenia so concerned primarily with bone health.

Hi zaa, A higher dosage of prednisone is needed to manage GCA. I wqas put up to 40 mg, when the rheumatologist suspected GCA. He took my height and weight into account, 4'11" and 95 lbs. Thirty years ago, my mother-in-law was put on 50 mg for GCA. I think she was on it a long time, and lived to be nearly 100. I'm on a tapering schedule - down 5 mg every two weeks if symptoms don't come back. I'm down to 25 mg now and will go down to 20 mg on Thursday. So far, everything is good. I had a dexa scan a couple of weeks ago and it's consistent for osteoporosis - so I'm now working on that. I've exercised consistently for the last 25 years, but have a strong family history of osteoporosis.
The consequences of GCA can be stroke or blindness so I'm grateful for the higher dosage of the prednisone, despite its side effects. Best to you..

I appreciate your feedback. Wish you best of luck in scaling down the prednisone and working on staying strong for your bones. Are you taking calcium or other medications for warding off osteoporosis? My doc just said we’ll check on plan for that in future.

Hi,
I had a bout of PMR 5 years ago and tapered prednisone for 15 months and then quite a stretch of remission or whatever. In December of 2020 it flared and an abbreviated taper of 3 months seemed to put it to rest. Since you second shot of Pfizer vaccine, about 3 weeks ago, I have been experiencing all of the symptoms. Currently awaiting my doctor’s decision based on a send rate test. Wondering if anyone else had a flare that seemed related to Covid vaccine.

Finally got to see rheumatologist yesterday after 3 months of increasing joint pain and exhaustion. I’m alarmed by the dosage (40 mg) of prednisone he put me on but already feel better this a.m. I’m waiting to schedule my Biopsy of temporal area (suspects I have GCA) due to my increasing sed rate, scalp tenderness and high C-RP rate. If it is GCA, then he says he increases prednisone to 60 mg. These amounts sound so high compared to everyone else’s amount of 10-20. Anyone else just get started on these high mg? I have osteopenia so concerned primarily with bone health.