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Posts (10)

Sun, May 17 6:35pm · Loss of smell and taste in Polymyalgia Rheumatica (PMR)

Have you eaten pine nuts recently? In Pesto?

Sun, May 17 6:33pm · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

Have you eaten pine nuts recently? In Pesto?

Mon, Mar 9 11:40am · Polymyalgia Rheumatica (PMR): Meet others & Share Your Story in Polymyalgia Rheumatica (PMR)

Hello steelbh… I am so sorry that you have PMR…. I believe most people with PMR symptoms do go away in just a few years. There is lots of helpful information on this site about tapering very, very slowly. Read everything you can! Be your own advocate!

I was first diagnosed at age 44 with PMR… I've been dealing with it for 18 years. So yes, some people it lasts a good portion of their lifetime. The last flu vaccine I received in 2014 set it off again and I have felt it in my body ever since then.

I usually taper to 1 to 2 mg and stay there… which is fine with me to be able to live a full life with just a little pain. I'm very active ride Mountain Bikes, hike, chase grand kids!

Last September I got a virus in my chest, terrible cough that lasted almost 2 months. It set off the PMR again. Doc put me on a very quick prednisone taper 7mg to 0 in 6 weeks! I don't think he believed me when I said PMR had returned.

Once I came off the drug the pain came right back. I went in for labs last Thursday… blood works show inflammation on the rise, but SED rate is not over the "high" line. CRP is high, but not extremely yet. I know my body and if left unchecked without prednisone the inflammation will keep going up. So I am now waiting to see if the Rheumatologist will agree and prescribe Prednisone again, or if I have to suffer for a few more weeks to get higher inflammation markers. What a racket! So depressing… Quality of life is awful when dealing with this condition and having to prove you are in pain. 🙁

Wed, Jan 22 8:08pm · PMR Anyone? in Polymyalgia Rheumatica (PMR)

I believe you! My mother's, my sister's, and my PMR was caused by the flu vaccine!

Wed, Jan 22 7:59pm · Is PMR Hereditary? in Polymyalgia Rheumatica (PMR)

Myself, my mother and my younger sister, all have/had Polymyalgia.

Mon, Jan 20 6:56pm · Prednisone, PMR, and Colds in Polymyalgia Rheumatica (PMR)

My PMR pain is totally compounded by any cold/flu/virus/or other inflammatory condition. I don't feel have enough natural Cortisol manufactured by my adrenal glands to handle the PMR let alone something else that needs inflammation controlled. So, yes I think PMR is a game changer. (I've had PMR on and off for almost 18 years!)

Nov 23, 2018 · Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain? in Polymyalgia Rheumatica (PMR)

Fingers crossed you find answers and your new doctor listens. It is so exhausting to have to quantify ones pain and to explain over and over again to every doctor where the pain is located and how it affects your daily life. Your spreadsheet is genius!

Nov 23, 2018 · Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain? in Polymyalgia Rheumatica (PMR)

Hi Carley,

I am truly sorry to hear about your pain…. My diagnosis was basically the result of ruling everything else out and the 20 mg dose of Prednisone that relieved the pain and symptoms of PMR.

I had blood tests for everything the rheumatologist could think of. I remember some of the tests were so obscure that the phlebotomist did not know how to draw the blood for the tests and had to look up the proper way.

All tests came back negative accept the CRP and ESR which were elevated, but not so elevated that it ruled out Giant cell arteritis. I had a cat scan to see if there was something wrong internally… negative. Negative on lyme disease, RA, cancer, infection, lupus, sjogren's, MS, thyroid, and many other autoimmune diseases.

After so many years I can accurately detect the pain of my PMR. It’s not in the muscle, not in the joints, or the bones. It’s inflammation in the connective tissue. Ligaments and tendons. Especially where they connect to the bone. My muscles are strong, not affected at all. But the pain in the connective tissue is so intense that I cannot use my muscles and I have limited ROM. I also feel it in the connective tissue in my rib cage. Every breath I take and with the expansion of my ribs I can feel the pain. The tendons in my neck were so inflamed that I could barely turn my head to the side. I can feel the warmth of the PMR inflammation on my skin. It also felt like the flu because it’s systemic and the pain is very exhausting. I did have a elevated temp as well. And would often wake with night sweats.

As for advice on questions to ask you new provider… I’m not sure. I’m not a doctor, but the dosage of your prednisone seems high and too short of a duration to treat PMR. It’s been the case for me to start at 20 or 15 mg and reduce by 1 mg every two or three weeks until I get to 10, then reduce 1 mg every month monitoring the pain. If I flare up I go back up 1 mg for the month and start the taper again. It’s a long process to taper and get off the meds, but it can be done.

I hope your new doctor can provide you with answers and that your pain subsides. Keep us posted on your progress.