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

Posted by sallyann @sallyann, May 10, 2016

I was diagnosed with PMR 2 1/2 years ago. Steroids didn’t help now I’m on Methotrexate for a month. My EMG today was negative. I take Tramodsl, Motrin, and Tylenol to deal w the extreme pain. What do I do next? I’m 54 now.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) group.

@johnbishop

I was diagnosed with PMR in early 2007 and was on prednisone (20 mg daily) for 3 years until I was finally able to get off of it gradually in 2010 when my PMR went into remission. Prednisone was a magic pill but it does have some side effects – the only one that bothered me was the weight gain. I think it increases your appetite. Unfortunately my PMR reared it’s ugly head again about three weeks ago so I recently started back on prednisone. I do think diet may play an important part of autoimmune diseases after reading a book – Wahls Protocol by Dr. Terry Wahls. http://terrywahls.com/about/about-terry-wahls/. I just try to stay close to the basic part of the diet – no gluten, no dairy, no sugar or processed foods. I do fudge a little but I figure any reduction of the gluten, sugar and processed foods is better for you. I’m also dealing with small fiber peripheral neuropathy which was diagnosed in March but I’ve had more than 15+ years just never bothered to get it diagnosed because I was always told if they find you have nerve damage there’s nothing they can do about it. This has been an interesting year and the one thing I have learned is you have to be your own advocate and while there may be no one thing that helps with your symptoms you just need to keep looking at finding something that will work of you. Hoping you are able to get your PMR under control as I know how much it hurts. Good luck!

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Hi John, I’ve just been diagnosed with PMR and am taking 20 mg prednisone/day. I’ve never heard of this disease, but have had Reflex Sympathetic Dystrophy (which, through a year of intensive excerises, went into remission) and Peripheral Neuropathy which is still present. I notice that you don’t use dairy…I’ve been told to drink milk and eat yogurt when taking the prednisone…no problems to date, but any advice you could give me would be greatly appreciated! Many thanks.

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Hi @dreamer38, welcome to Connect. I did stop using dairy products for a short time but found it wasn't making any difference for me. I also have osteopenia so I'm supposed to take calcium pills but they plug me up pretty bad so I switched to eating more veggies that are high in calcium and drinking fat free milk with my pills. The biggest issue with me taking prednisone was weight gain. My first occurrence of PMR I gained around 40+ pounds. The second time around I was conscious of weight gain so I did more exercise and cut back on the calories by trying to eat healthier. The big no for me was giving up all fast foods. Even with that my weight was up and down weekly 4 to 5 pounds.

The prednisone contributed to the osteopenia so you might want to talk to your doctor about calcium supplement and tapering off of prednisone as soon as you are able. The first occurrence I was on it for 3 years until I was able to taper off with no pain and the PMR went into remission. The second round with PMR was 6 years later and lasted about a year and a half before I was able to taper off.

Has your doctor mentioned trying to taper off yet?

John

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Thanks for replying, John. Can you remember how you coped with the pain when first diagnosed? I’m having an awful time. The pain is so bad, I would really appreciate getting some coping guidelines. I’ve been taking 20 mg prednisone for almost two weeks now. Unfortunately, my doctor is off on holidays for two weeks. Pain seems to lessen in late afternoon/early evening…taking prednisone very early in a.m. as well. Having occipital neuralgia and going to a Pain Clinic for many years, I think my pain tolerance is pretty good! As I said, any help would be great. Am seeing my doc on his return.

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@dreamer38

Thanks for replying, John. Can you remember how you coped with the pain when first diagnosed? I’m having an awful time. The pain is so bad, I would really appreciate getting some coping guidelines. I’ve been taking 20 mg prednisone for almost two weeks now. Unfortunately, my doctor is off on holidays for two weeks. Pain seems to lessen in late afternoon/early evening…taking prednisone very early in a.m. as well. Having occipital neuralgia and going to a Pain Clinic for many years, I think my pain tolerance is pretty good! As I said, any help would be great. Am seeing my doc on his return.

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Hi @dreamer38, when I was first diagnosed with PMR the pain was really bad in my shoulders and arms and a little in my legs but not as bad. The prednisone at my 20 mg dosage pretty much made all of the pain go away for the day and most of the nights until I took the prednisone the next morning. I know that some have found splitting the dosage helped with the evening and nights but I really never had to do that. One thing I think that helped me cope a little better was mild exercise in the morning after the prednisone kicked in. It sounds like the prednisone doesn't start working for you until later in the day/evening even though you take it in the morning?

Here's some ideas that may be helpful:

Coping with PMR and GCA: Hints, tips and strategies
https://www.pmrandgca.org.uk/coping-pmr-and-gca-hints-tips-and-strategies

Also an interesting article on diagnosing PMR here: Polymyalgia rheumatica: Look before you leap
https://bpac.org.nz/BPJ/2013/June/polymyalgia-rheumatica.aspx

I hope you will update us after seeing your doc. It's good for all of us to learn as much as we can about our health issues.

John

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Hi John, thanks for the articles…read both. Hopefully, the 5yr-old one will have changed somewhat!! Yes, I will update you after doc appt. I find one side of body is better, but the lhs, and I’m left handed, stays quite painful and stiff until late afternoon. Am still on 20 mg prednisone and will continue until I next see the doc. Am now taking prednisone at 5:30ish a.m. so as to get relief earlier in the day!

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@johnbishop

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.

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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

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@beryl

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

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Hi Beryl @beryl… My last bout with PMR ended this past February when I finally was able to taper off of prednisone. It only lasted a year and a half. The first bout lasted 3 years and it went into remission for 6 years so I'm hoping I get another six years or more of no PMR. You have the right attitude – keep smiling and taking it one day at a time.

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Oh good John I must have read the post wrongly , keep going and keep as well as possible……Beryl……

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@johnbishop

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.

Jump to this post

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!

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@ltta

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!

Jump to this post

Hello @ltta, welcome to Connect. I'm sorry to hear your PMR is back. My second occurrence finally went into remission last February when I was able to taper off of prednisone. Have you done any work on your diet or nutrition to help reduce the inflammation associated with PMR? After my first bout with PMR I developed small fiber peripheral neuropathy and started looking at cellular nutrition as something to help improve my overall health. I started working on it after reading a book by Dr. Terry Wahls – The Wahls Protocol. She has an interesting story to tell on how she used nutritional changes to eliminate the symptoms of her MS. More about her here: https://terrywahls.com/about/about-terry-wahls/

There certainly is a lot of debate about to get a flu shot or not. This year I am participating in a flu shot clinical study for elderly folks so I'm hoping they get some useful information from the study. I can understand not getting one if you've had a bad experience but I'm pretty sure my PMR was not caused by a flu shot. Here is an article that might help give you more background information about the benefits and risks of getting the flu shot if you immune system is compromised and to help you ask the right questions of your doctors to get clear answers.

If Your Immune System Is Compromised, Can You Get Vaccinated?
https://health.clevelandclinic.org/if-your-immune-system-is-compromised-can-you-get-vaccinated/

@ltta thanks for the shout out. We all need to do that now and then! I'm hoping your PMR goes into hiding quickly.

John

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Hi John, I appreciate this forum to Connect. Thank you for the welcome. 🙂

As you can image, after 15 years I have tried every diet under the sun to help with the PMR. My PMR is not diet related.

I applaud you participating in the flu shot clinical study, I hope you can keep us posted to the outcome.

Below is the url for VAERS website that one can search all the adverse reactions to vaccines. You'll need to add https:// to the link to get it to work.

wonder.cdc.gov/controller/datarequest/D8

Or just do a search for VAERS Vaccine Adverse Event Reporting System and you'll find it.

I was flabbergasted when I finally found this website to confirm that other people have gotten PMR from the flu vaccine. Hundred of thousands of other adverse reactions too.

I’m not saying that vaccines are not good and well intended, they are just not for “everyone”.

And, they are not for “me”. I hope posting this may help others who have similar adverse reactions and can’t find answers.

Thanks again for the welcome!

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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.

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