Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain?

Thanks for your reply. I think the doseage of prednisone was because the doctor I saw really doesn’t know what I am experiencing and is just calling it musculoskeletal pain. I am keeping a daily flow sheet of pain, ROM for upper extremities. Etc so I have some data to take with me. I am hoping I can get some better imaging like cat scan or mri to help rule out other issues. I will just have to wait it out. At least I am finding some good info and forums to follow for advice from people who have been through this before. My next appointment is in 3 weeks. Earliest I could get.

Hello I’m 60, young for PMR…. But that’s not it! First diagnosed with PMR at 45… it started when I was 44. Of course all doctors said I was too young for PMR. It took 6 months of tests and excruciating pain to get the diagnoses. I have been living on and off with this disease for 15 years, and on and off prednisone (the miracle drug for PMR) for the same time frame. In fact, I just got another script for 400 pills.

I used to wait until I was in so much pain that I could not walk, or barely get out of bed, before I asked for meds. I know, after 15 years, that if I nip it in the bud early on with a low dose (5 mg or less) soon after the the pains begin, I can get it under control without having to start at a higher 20 or 15 mg dose.

What started my PMR 15 years ago???? I was in super physical condition. Running 20 miles a week and riding a bike at least 30 miles. Lifting free weights, feeling great! I got the flu vaccine and the next day I could not get out of bed. Could not walk up stairs, had to use a cane to walk into the doctors office. Docs all said that is not what caused it and that I was too young for PMR. Go see a chiropractor, a physical therapist, a masseuse. I finally saw a Rheumatologist at Kaiser that prescribed 20 mg of prednisone. The next day all my pain was gone. :). OMG. If you have PRM you know what that feeling is like!!!!!! Totally and truly gone! They still said that the flu vaccine could not have started the PMR.

So for years I believed the Kaiser docs and I continued to get flu vaccines. They push it on you. Get your flu shot! Get your shingles shot! Get you pneumonia shot!!!!

The last flu vaccine I had was in 2014…. I was feeling really good not on Prednisone and had been off it for over a year and thinking, finally… free of PMR. Then I had the shot, and went for a hike with a friend…. halfway into the hike, I could barely walk, I was out of breath, everything ached. I almost didn’t make it back to her house.

Went to Kaiser Rhumy - he said no this is not PMR… everything ached. Neck, wrists, chest, hips, pelvis, legs, knees, ankles! Blood pressure was through the roof. What the heck! No one believed me when I said it started the day I got the vaccine!

Since then, I have never had a vaccine. As I look back over the years, sometimes the vaccines hit me right away… some times it took a few months for the symptoms to slowly creep up and start the PMR. But always, it was the culprit. I think the inconsistency of the symptoms is what made me confused as to what started the relapses.

Now… something else to ponder. My younger sister has the same thing. Flu vaccine and vaccines to go to Africa, sent her into PMR. My mother bless her, no longer with us, had pain for 27 years, and could not figure out what it was. Her first pain started with flu vaccine at age 50! ( that’s when you started getting flu vaccines back in the 80's) Without ever being diagnosed or taking any prednisone, she’d get a little better during the year then she would get the flu vaccine in the Fall and it would start all over again.

Many people get PMR for various reasons. In my family vaccines (or whatever is in the cocktail) is what starts the disease.

The last flu shot I received in 2014 was the worst. I’m still trying to get it under control. I can get off the prednisone for awhile, but if I have something that causes a lot of inflammation/pain in my body for a period of time the PMR kicks in too. It seems like my adrenals cannot keep up with the cortisol that’s needed to control the inflammation in my body. I have pain in the kidney area too, mostly the left side. Adrenals are located on top of the kidney so that may be it?? Docs also thought I was crazy saying my kidneys hurt.

Since August I’ve had a lot of pain in my wrists. It’s De Quervain's Tenosynovitis and the first time I got it was with the last flu shot. And, because I’m dealing with that pain the PMR has relapsed again and I’m back on prednisone. 🙁

I’m rambling because “IT’S BAAAACK” … I haven’t posted to any board in quite a while about PMR… this thread is so new/current I just wanted to shout out!.. Watch out for vaccines!

Hello @carina, Welcome to Mayo Clinic Connect. Thank you for sharing your experience with PMR. It really is great when members with similar symptoms can share their experience and let us know we are not alone. I also have PMR but it's currently in remission. My first occurrence was in 2007 and lasted 3 years at which time I was able to taper off of prednisone. The second occurrence was in 2016 and lasted a year and half before I could taper off of prednisone. I'm not sure what it is about the disease but while it's similar for a lot of us, each of us seem to be affected a little differently. I also have edema in my lower legs and have seen some pitting. I'm 75 now and also have lymphedema which I have to wear compression socks to help with the swelling.

Have you seen a rheumatologist? Thanks again for joining the discussion.

John

I was diagnosed with disease last December. First few doses of 20mg of prednisone like a miracle. Now I have tapered to 6mg a day and plan to go to 5 to-morrow, March 1st, and see how I do. I believe diet extremely important. To begin with no processed foods, now/very low sugar, lots of fresh veg and fruits. Also anti-inflammatory spices and herbs. You can find list on internet. John Bishop is good mentor/advisor.

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.

@carina - From Tinkerbell - I tapered off of Prednisone for GCA last October. The Neurologist at Mayo told be to be very careful about taking any vaccines. I had the flu shot in November and since then have had pain on the right side of my face. No one knows what is wrong with me. I told my husband I would never take another vaccine.