PMR Anyone?

Hey John thanks for the response. By super active I’m less the weekend warrior that I used to be athletically now just moving a lot - walking, gardening projects, house chores, playing catch with my son’s etc. you do make a great point. I think I’ll try to keep track and just see how the aches and pains might align with the previous days activity.

Regarding diet I’m a pretty healthy eater not much red meat, lots of non-inflammatory veggies. I did swap out cream in my coffee for oat milk because it just made me feel better. I rarely drink alcohol- Despite the fact I love beer!

I saw some references to the Wahl diet But after reading through some of the recipes I doubt it’s for me. I really hate to cook and eat primarily for fuel. Grilled fish or chicken with a side of steamed vegetables and salad is more my style! Any ideas?

Yes a very strange disease this PMR & really no-one has the answer to where it comes from why some people get it & then no cure. Sure glad for prednisone because without it well yes the pain is really bad. Now no-one is an expert but I did notice the people that are very active tend to get it why well we will let the experts figure that one out. I had said that I am on 7.5 mg/day. I take 2.5 in the AM & 5 in the PM & for me it works. Yesterday I was able to play a round of golf with no problem what so ever. Next week will do some down hill skiing that is if the predicted storm arrives. Otherwise it will be the gym. Stay active

Hi @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!

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?

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?

I 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

sounds like a very good plan! I think having the antibody test will help me decide!

Yes. 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.

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?