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Thu, Mar 7 3:56pm · Polymyalgia rheumatica in Autoimmune Diseases

Thanks for sharing your story, Peanuts. My Doctor, like yours, told me that I would be on Prednisone the rest of my life. That was in 1999 and perhaps that was the prevailing theory then. I started tapering off Prednisone last summer and by early Feb, this year, was off it completely. Slowly and steadily though, my PMR symptoms returned… the stiffness in the AM, the inability to get into a crouch position, the impossibility to sit down without reaching for things to grab onto… many symptoms, as everyone here knows. So, last week I started on 5 mgs again. Most of my pain has diminished. Like you I also had pain in my right arm (not one of my usual symptoms of PMR) and believe that it could be Carpel Tunnel Syndrome. In the AM I cannot make a fist with my right hand either; is that the same for you? I also had very painful calves which I now believe is a separate issue… poor circulation. Thanks to @johnbishop who suggested I use Compression Stockings; that has been a huge help. It is such a great feeling to see progress. Carina

Thu, Feb 28 2:19pm · Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain? in Autoimmune Diseases

Thanks for sharing, @tinkerbell. I'm sorry you are suffering from pain on the right side of your face; it must be terrifying. I am assuming it was a reaction to the shot tho, of course, I don't know that for a fact. What you said to your husband is exactly what I tell everybody.

Thu, Feb 28 7:46am · Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain? in Autoimmune Diseases

Thanks for your response/suggestions, noosat1. I know exactly how incredible it feels to have Prednisone work so well in literally 2 or 3 days. I should have tried to taper down like you are doing; I wish you well. I'm trying to adjust my diet. Everything I like seems to be on the AVOID list. 🙁

Thu, Feb 28 7:34am · Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain? in Autoimmune Diseases

Thanks for the nice Welcome to MCC, John. Sharing experiences improves our health as much as drugs sometimes.

I bought a pair of compression socks just last weekend but got so dazzled and distracted by the range of cool designs that I ended up buying a size too small. I will be getting a larger pair in a few days. As for the Rheumatologist, I haven't yet but will be asking my Dr for a referral the next time I see him, hopefully next week. In my neck of the woods, such an appointment will take 8 months or so.

Thanks again for your interest and support.

Thu, Feb 28 6:12am · Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain? in Autoimmune Diseases

I was fascinated with your post. I am 73 and was diagnosed with PMR in 1999. I was put on Prednisone and, after a period of tapering, ended up with a daily dosage of 20 mgs. I remember vividly my Doctor saying that I would be on Prednisone the rest of my life. He also said that if I ever had a blinding headache, take as many Prednisone pills that I could hold in my hand and go straight to Emergency. This was alarming but also encouraging because it implied to me that Prednisone must be a relatively safe drug. From 1999 until 2017 I had been feeling fine, actually better than fine. In October 2017, my current doctor asked if I wanted a Flu Shot. I routinely have had Flu Shots and I said Sure! Within 3 days my left shoulder hurt. The kind of hurt where one can not get comfortable in bed. Three days later, that pain was gone and was replaced by a similar pain in my left hip. Three days later, that pain was gone and there was something wrong with my feet and calves. Both feet were slightly puffy and felt numb-ish. Both calves were very painful. And that is the same today… over a year later. My Doctor had ordered many blood tests, a chest Xray and an EKG. Everything appeared normal. He arranged appointments with a Physical Therapist/Pain Management Doctor and an Endocrinologist. The PT Doctor said that I was, in fact, very healthy. She also said that she didn't know what happened to my feet but that they would never get worse and that I would never need a cane or wheelchair. The Endocrinologist said that I likely had "Reactive Arthritis" and that, for my size, I was taking too much Prednisone for too long. He started a tapering program (roughly last summer) and in early Feb. 2019, I was completely off Prednisone. Since my legs continued to hurt and the pain had spread somewhat to my thighs, I could not identify any withdrawal symptoms. However now, 3 weeks after being off Prednisone, I feel those dreaded PMR symptoms coming back with a vengeance. I will be seeing my regular Doctor soon. What I appreciated about your post was the connection to the Flu Shot. I was convinced that my pain was triggered by the Flu Shot but almost everybody I mentioned it to scoffed at the notion. I feel vindicated, Itta! (Though still in pain!) I don't know what happened to my feet. I don't know what happened to my calves but I suspect poor circulation since I have noticed pitting edema around the ankles. I will be asking my Doctor if I should have an ultrasound of my legs and, of course, will return to some level of Prednisone help.

Anyway, I want to thank you for your post. This Forum has been a huge comfort for me.