PMR Anyone?

Posted by olegraymare @olegraymare, Jan 4, 2018

I was diagnosed with polymyalgia rheumatica about a year ago. I WAS a very active 69 year old female all of a sudden, not being able to get out of bed on her own and having severe hip flexor pain. As is customary, after waiting 3 months to see a rheumatoid arthritis doctor, she administered the C-reactive protein test and I was VERY high. So, she diagnosed me with PMR and prescribed 15 mg of prednisone. I don't like taking meds (as most of us don't), but I was in pain and had no quality of life. I'm a swimmer and could hardly dog paddle ! One year later, I have been weaning off the 15 mg down to 1 mg. My RA said that now it's a matter of determining if I have PMR or arthritis ... so, she prescribed 7.5 mg of meloxicam for a month. I will say my shoulder pain seems better, but my hip flexors are awful !! I don't want to go back on steroids - the devil drug. I would like to get to the "crux" of what is CAUSING my inflammation??? No doctors seem to address that? What would be my next step? A nutritionist? I am leary of taking supplements, as well. Thank you for any help or sharing your experience. Weird disease ... I just want my old life back - being able to move without pain, etc. Too much to ask?

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

@dluckey1

Sorry you're having morning pain. You don't mention how much prednisone you're on? Typical starting dose is at least 15 to 20 mg. I know not every rheumatologist start at that level, but I did not find any relief at 10mg which I was started on or 15mg, but did find relief at 20 mg - which is a common starting dose to begin with. Let your doctor know that you're not having relief and see if you can increase it.

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And I do split my dose. I take half in the morning with breakfast and half in the evening with dinner. And I take Tylenol as needed. Assuming your doctor has approved Tylenol.

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@scpartain

Your struggle with PMR completely mirrors my own experience. I had my first bout thirteen years ago in 2008. It recurred in January of this year after I received the Pfizer vaccine for Covid. Like you, I could hardly get out of bed and it was difficult even to use the bathroom, dress myself, or comb my hair. I felt like crying every morning. However, by afternoon of each day, things improved and I was able to function. With the help of a skilled rheumatologist, I managed to get the symptoms under control with prednisone. I hope you find relief soon. Best of luck in your journey.

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I am 72 and was completely healthy and active. 2 weeks after my pfizer shot I started my PMR symptoms by the time I was diagnosed I was almost a complete invalid started at 40 mg now I am at 10. prednisone sure works, but now i am concerned about my immune system
Got my second Pfizer shot and last week my Moderna booster in 2 weeks will get my 65+ flu shot I am not sure how much protection these shots give me as prednisone suppresses the immune response probably minimal as I have been told by two doctors. It has also pushed up my blood sugar so we are now dealing with that. We are all different but on common goal, get better and get off this drug

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@skiing

I am 72 and was completely healthy and active. 2 weeks after my pfizer shot I started my PMR symptoms by the time I was diagnosed I was almost a complete invalid started at 40 mg now I am at 10. prednisone sure works, but now i am concerned about my immune system
Got my second Pfizer shot and last week my Moderna booster in 2 weeks will get my 65+ flu shot I am not sure how much protection these shots give me as prednisone suppresses the immune response probably minimal as I have been told by two doctors. It has also pushed up my blood sugar so we are now dealing with that. We are all different but on common goal, get better and get off this drug

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I'm sorry you have contracted PMR. It's an incredibly painful experience. Your concerns about prednisone are certainly valid. No one wants to take it. In my case, I have also been diagnosed with severe osteoporosis and prednisone is known to cause bone loss. However, my PMR is currently in remission after slow tapering of prednisone that took several months. I hope you are able to successfully taper, the sooner the better, of course, although it is a process that cannot be rushed. Best wishes in your personal journey and keep everyone updated about your progress.

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New member,
My PMR started April 2018. At the time I was on 25mg of statin which I resisted for years. I was on it for about a year when one day I started having thigh pain thinking it was a pulled groin muscle but when it started on the on the leg I stopped statins. The pain spread till I couldn't walk or manage to drive. My caregiver put me on doxycycline for lyme but had no results. In order to get through the day I was eating ibuprofen 600mg every 6 hours around the clock. this went on for 6 weeks till I was finally diagnosed with PMR. Started on 20mg of prednisone tapering when I could but after 4 years in April and many resurgent flairs I now am on 10mg sublimating with one ibuprofen before bed to wake with discomfort till I can take my prednisone.
It is my strong opinion and has been since beginning that the statins started the PMR nightmare although my rheumatologist dismisses it. I'm hopeful someday to be done with this.
Thank you for your ear,
MaryAnn

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@maryannhaller

New member,
My PMR started April 2018. At the time I was on 25mg of statin which I resisted for years. I was on it for about a year when one day I started having thigh pain thinking it was a pulled groin muscle but when it started on the on the leg I stopped statins. The pain spread till I couldn't walk or manage to drive. My caregiver put me on doxycycline for lyme but had no results. In order to get through the day I was eating ibuprofen 600mg every 6 hours around the clock. this went on for 6 weeks till I was finally diagnosed with PMR. Started on 20mg of prednisone tapering when I could but after 4 years in April and many resurgent flairs I now am on 10mg sublimating with one ibuprofen before bed to wake with discomfort till I can take my prednisone.
It is my strong opinion and has been since beginning that the statins started the PMR nightmare although my rheumatologist dismisses it. I'm hopeful someday to be done with this.
Thank you for your ear,
MaryAnn

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Hi MaryAnn @maryannhaller, Welcome to Connect. My first occurrence of PMR lasted for 3 and half years and like you I had trouble tapering down with prednisone. I also started with 20mg. I spent the last six months going back and forth between 1mg and 1/2mg dosage until I was finally able to stop taking it and only had minor aches and stiffness which got better after I got up and started moving around. My second occurrence of PMR came after being in remission for 6 years, but this time I had made a few lifestyle changes which I think made it possible for me to taper off of the prednisone in a little over a year and half. Most of the lifestyle changes that helped me was losing a little weight, including exercising and eating healthier - eliminating a lot of the extra sugar intake, processed foods and fast food take outs. Here's some information that you might find helpful if you have not already tried it.

Can Diet Affect Symptoms of Polymyalgia Rheumatica?: https://www.healthline.com/health/polymyalgia-rheumatica-diet

Have you tried any lifestyle changes to see if they might help also?

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@johnbishop

Hi MaryAnn @maryannhaller, Welcome to Connect. My first occurrence of PMR lasted for 3 and half years and like you I had trouble tapering down with prednisone. I also started with 20mg. I spent the last six months going back and forth between 1mg and 1/2mg dosage until I was finally able to stop taking it and only had minor aches and stiffness which got better after I got up and started moving around. My second occurrence of PMR came after being in remission for 6 years, but this time I had made a few lifestyle changes which I think made it possible for me to taper off of the prednisone in a little over a year and half. Most of the lifestyle changes that helped me was losing a little weight, including exercising and eating healthier - eliminating a lot of the extra sugar intake, processed foods and fast food take outs. Here's some information that you might find helpful if you have not already tried it.

Can Diet Affect Symptoms of Polymyalgia Rheumatica?: https://www.healthline.com/health/polymyalgia-rheumatica-diet

Have you tried any lifestyle changes to see if they might help also?

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Hi John,
Yes I have cut gluten, sugar and dairy from my diet. Weight is not a problem as I'm 5' 2" and weigh 108lbs. I'm 67 years old. I walk 3 plus miles a day and am very active. I'm not sure how I can improve my life style. I eat very healthy. Always cook my own food never eat out. Lots of greens and no red meat. tons of chicken though.
Thank you for your input. This site is wonderful. To read others experience and feel so alone!

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@maryannhaller

Hi John,
Yes I have cut gluten, sugar and dairy from my diet. Weight is not a problem as I'm 5' 2" and weigh 108lbs. I'm 67 years old. I walk 3 plus miles a day and am very active. I'm not sure how I can improve my life style. I eat very healthy. Always cook my own food never eat out. Lots of greens and no red meat. tons of chicken though.
Thank you for your input. This site is wonderful. To read others experience and feel so alone!

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Hi MaryAnn, It's good to hear you are already living a healthy lifestyle and exercising. I do think that helps a lot with PMR. You might also find the following discussions helpful:

-- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
-- Prednisone tapering and remission: https://connect.mayoclinic.org/discussion/prednisone-tapering-and-remission/

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as a retired physician i will give you my unabashed input..first of all it is ludicrous to wait to see a rheumatologist for three months..your internist should have called on your behalf to urge a sooner appt or he isn't worth his salt..or he could have gotten some phone advice from the rheumatologist..secondly with your symptoms, an elevated sed rate and crp and the immediate response to the steroids is almost pathognemonic for pmr..taking celebrex[which can have side effects] is an anti-inflammatory that may alleviate some discomfort but ii would advise a very slow taper of your steroids

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@kspowell

Thank you for this information! I agree that it seems like something lurks in the background ready to pounce and something happens to put the autoimmune system in overdrive, and voila - in my case, PMR attacks out of nowhere. I see both traditional and functional medicine practioners and believe both have worth. In the case of my functional friends diet and healthy living are emphasized and of course that's harder than taking a pill. But at some point that pill (prednisone) is desperately needed. I have always gotten all of my vaccines and did so with Covid as well... but I am highly suspicious that the covid vaccines were the straw that broke the camels back so to say, and revved up my immune system and ultimately that's what caused the PMR to surface. We know that's what vaccines do put the immune system in overdrive (that's what they're supposed to do) and we also know that our immune systems don't work as well with age. My dilemma now is what to do about the booster shot. I don't want PMR to surface again, I'm still trying to get to 15 mg Prednisone, down from 40. Is anyone else struggling with what to do about the booster shot?

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@kspowell. HI ks. I have had GCA since March, 2019. I was treated in July, 2019, with 3 days' hospitalization on 1000 daily units of I.V. Prednisone because I suddenly lost the vision in my right eye and Prednisone could hopefully save the vision in my left eye. Had a stroke on the second day of the 3- day treatment and a second stroke in September of that year. Had a heart attack in July of 2021, as well as two DVTs.! GCA has not been kind to me!
By November, 2020, while I was tapering down on Prednisone, my rheumatologist put me on weekly Actemra injections as well. Actemra is specifically developed for GCA and so much easier on the system than Prednisone. I was on both for a few months but had to be suddenly taken off both for a period of time because my WBC and neutrophils bottomed out. Once my lab results improved again, I restarted only the weekly Actemra injections. (I had awful withdrawal for six weeks following the stoppage of Prednisone.) A month ago, my rheumatologist adjusted the Actemra schedule to an injection every two weeks.
I had two Moderna vaccines, in January and May, 2021. The first one gave me only a sore arm for a day or so. The second Moderna shot had me VERY nauseated, weak and dizzy, to the point where I could neither eat nor drink for five days.
Because I'm 86 years old, have several other autoimmune diseases, and Actemra is imunosuppressant, (and I'm on a wait list for Long Term Care), l had my Covid booster shot of Moderna last week on the recommendation of my rheumatologist. I was a little worried about taking another Moderna shot after the severe side effects I had after my second shot. but I was FINE! Nothing more than a sore arm for a few days! The nurse at the Immunization Clinic told me that the booster usually has little or no side effects, even if you've had a big prior reaction. Such a big relief! Lol.
I hope you will have the same good luck. I think it's SO important for us to get that booster if we're immunocompromised.
Sorry for the long story!
Warm regards, Laurie

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