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

Hello John it's Beryl......I am so sorry that you have another bout of PMR.....I hope on your behalf that it doesn't last too long.....as for me I just go on and on with this thing and it never seems to go altogether ....have an oppointment at the hospital next Monday ....I don't suppose my Doctor will change anything .....three Mgs a day .....been that way for along time now .....oh well worse trouble at sea as my Mum used to say.......keep smiling .....Beryl

Well after my previous posts, unfortunately my PMR came back in the past few weeks and I am back on 20 mg of prednisone. I'm hoping I don't have to take it more than a few months and after awhile the PMR will go back into remission for another 6 years. I am still having some pain in my wrists with the same dosage of prednisone that was a magic pill with my first bout of PMR but I think it is because I have carpal tunnel in both wrists. I have an appointment setup to get another evaluation and possible nerve test in the hands. Still feeling blessed to have had the PMR in remission for the 6 years and only numbness in my legs and feet with the SFPN.

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!

I started having all over body pain about a year ago. Started with rheumatologist local clinic, then a hematologist local clinic, then a neurologist local clinic, then a neurologist Madison WI. Each giving me relevant tests. Ended in Madison with deep muscle biopsy. They ruled out everything they thought it might be. During the investigation I was requested to have an MRI. I am allergic to the die so they had me take 30 mg of predisone at 3 AM in the morning. When I woke up at 7 AM I had no pain and my tumid lupus spots were mostly gone. Later that afternoon I had an additional 30 mg of predisone prior to the MRI. The muscle pain and tumid lupus spots were gone for about a week. After my rheumatologist and hematologist conferred they decided I had PMR. They started me on 20 mg/day predisone and decreasing the dosage by 1 mg/day/month. I did this until I was down to 7 mg/day and the muscle pain came back. The rheumatologist recommended I go back to 10 mg/day and add 12.5 mg methotrexate per week. I then started decreasing the predisone 1 mg/day/month. I am back down to 7 mg/day and will drop down to 6 mg/day in December. My tumid lupus spots have returned and do not seem to be affected by any of the current medication. So far the PMR seems to be under control. I have a little stiffness in the morning but seems to wane as the day goes on.

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!

I find your post interesting. I am 63 and have been having symptoms that seem to mirror others who have been diagnosed with pmr. I currently have no diagnosis. I have had blood tests with elevated CRP and ESR. I do not have RA according to blood test results. I had a series of X-rays that indicate some degeneration in neck and shoulder areas. My symptoms appeared shortly after getting the flu shot. I have been trying to research what I do next to figure this thing out. I am currently on my 3rd round of prednisone for 20 days starting with 40 mg and decreasing by 10 mg every 5 days. My provider has not scheduled any follow up blood work or appointment and seems to be satisfied with a diagnosis of musculoskeletal pain. I don’t think he quite understands the pain and symptoms.
I have trouble getting more than 2 to 3 hours of sleep at a time. I get out of bed around 4 or 5. It is difficult to get out of bed and walk down the steps. My mobility improves as the morning goes on and around 10:00, I’m usually feeling better. I usually cannot move my arms much with limited ROM especially left side. Even when the major pain and stiffness decreases, I still hurt even at rest. Pain is mainly shoulders and hip/buttock area, heel pain, numbness in both arms and sometimes feet, feeling of being warm like a hot flash.
Seeing a rheumatologist in my area has at least a 6 to 8 month waiting time. I have an appointment with a new provider in 3 weeks so any advice on questions I should ask or additional tests would be appreciated. Thanks in advance.

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.