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PMR Anyone?
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?
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Sounds like you are already on top of the healthy eating. I do take some supplements to hopefully help keep the inflammation down. I too have switched to not much red meat and mostly chicken, turkey and some pork (and bacon!) along with veggies. I try to limit the sugar and all fast foods. Also have mostly switched to water, coffee and tea for beverages. I used to be really fond of beer 🙂 I also take some supplements for my neuropathy which are also included in the ones listed for PMR here -- https://www.arthritis-health.com/blog/diet-and-supplements-polymyalgia-rheumatica-pmr
I'm trying to cut down on the carbs but bread is one that I have trouble giving up so I try to limit it. There is another discussion that has helped and might be helpful for you -- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/
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1 ReactionI have had success splitting up my prednisone doses based on researching how long it stays in the system. I have been trying to break the 17.5 mg level and get down to 15 ml continuing my tapering; however until I started splitting up the dosages am and pm I was unable to do so. Now I am at 15 mg finally! I take 2/3 in the am and 1/3 of the dose in the late afternoon/early evening
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2 ReactionsHi @rolandhp, From Cecil and Goldman's Textbook of Medicine, "These disorders (PMR + GCA) are propagated by antigen-driven, cell-mediated immune mechanisms that may be associated with specific genetic markers ..." They occur more often in women than men, usually Caucasians, and to persons 50 years or older. The highest rates occur in those of Northern European ancestry. My ancestry is Southern European, and my maternal aunt had PMR + GCA. Also, my mother-in-law had these disorders and her ancestry was English and French. The onset of my symptoms came after what seemed a minor but annoying ankle injury from walking backwards too much. My aunt's symptoms came on after she hurt her back moving furniture. Usually, with autoimmune disorders, it seems there's an event that triggers the immune system to go into overdrive. I think of PMR +GCA as the beasts, lurking in the shadows, waiting for an opportunity to pounce. I just started a taper of prednisone to 7.5 mg in one dose - so far, no problems, and I'm strength training three times a week, walking /stepping at least 5 days and doing two 15 minute sessions 6 days a week on a Whole Body Vibration Exercise Machine. The pain of PMR was like nothing I ever experienced. I will never forget the incredible stiffness and being unable to move in any way without pain! All the best. Stay active, but don't overdo it, as many report problems when they do. Best wishes!
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4 ReactionsThank 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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2 ReactionsEveryone is different but I had the booster with no real problems. My arm hurt a little bit and I was a little tired. Just like the second shot. Good luck!
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3 ReactionsI had the 2nd Moderna shot in Feb and 2 weeks later, NEVER having had PMR (I am 77) all the symptoms came on overnight. I did not know about PMR so I didn't know what to attribute the galloping pain in muscles...I just kept saying: Something is wrong with my muscles and joints. It took 4 months of working with my PCP and getting a million tests and then she referred me to a Rheumatologist. My sed rate was 49, CRP normal. To make it simple, I have PMR. I truly see it having coming on with the MOderna shot...I still believe it was important to get the shot given my other physical liabilities (Pancreatic cancer survivor 5.5 year when I was supposed to live only 2 months!).
On the booster. I saw my Immunologist and he tested my antibodies for Covid. I am in GREAT shape. Protected well. He said we should wait until the protection wanes from the MOderna, and he says it will...his has, his mothers' has, his wife's has. But, to wait till the 8 month window to see again
Meantime, it is now 8 weeks on 10 mg prednisone. Plenty of side effects...enough to try the first level wean...down to 9 mg from 10 mg. Not so easy. Some pain (not all of it) returned). I am going to stick this out at 9 mg for a while and see if I can lessen the BP and blood sugar effects (I am type II and on 2 kinds of insulin). I have been eating very low carb for 9 weeks, eating 16/8 itermittent fasting. NO packaged or processed foods. I believe that is keeping my weignt under control. I have gained only 2 lbs in 9 weeks which I think I great. So, YES, I believe that MOderna shot number 2 kicked off this PMR. I don't know yet if I will get the booster...pondering that...Not time yet. May want another set of antibody tests before I decide. Best to you! Sharon
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3 Reactionssounds like a very good plan! I think having the antibody test will help me decide!
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2 ReactionsYes. I do too. Eventhough the CDC has no data to warrant using antibody testing as a deciding factor...in fact, a fully trained Immunologist who I trust ordered the test. My antibodies were 999 for Covid-19. That came from the two shots. So, you may have to request the antibody testing knowing the CDC doesn't recommend it as a means for deciding about booster...STILL it helped me and my doctor to decide to WAIT A BIT.
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3 ReactionsI also attribute having PMR to the vaccine. Within 24 hours of having the first dose, I was in serious pain. At first I was diagnosed with Reactive Arthritis which has been reported to result from the vaccine. Took prednisone. Got better until I stopped the prednisone and was back to severe pain. Finally, the PCP ordered CRP and Sed tests. CRP was 85. I've been on prednisone since last February. The rheumatologist said there aren't data yet about the vaccine causing PMR. Could be coincidental. I'm a Caucasian female, age 81, so a good candidate for PMR. Talked with both the PCP and the rheumatologist about getting the 2nd shot. Finally measured my antibody level and I have sufficient antibodies that for now no second shot. We're waiting until we know more. I am worried about the second shot causing the PMR to flare up and require my going to a higher dose of prednisone. Right now I'm at 9 mg per day and doing reasonably well with help from some acetaminophen. The rheumatologist would like me to be at or below 5 mg/day before getting the second shot.
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3 ReactionsI had the flu shot a couple of weeks ago without any flareups. If offered the booster shot for COVID, I will take it. I'd rather have my immune system react with a flare-up of PMR or GCA than go to battle with COVID. At least the symptoms of PMR and GCA can be managed with prednisone, and for the most part, are not life-threatening.
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