After PMR and return to good health

Hello Alan @alanbruce, Sorry I missed your post. Glad to hear you are doing well with your PMR. You ask a great question. I'm not sure of the answer other than what I've heard from my rheumatologist that once you have been diagnosed and treated for polymyalgia rheumatica (PMR) even when it goes away after being treated it's still in your system and can come out of remission at any time. I think that might be due to lifestyle events, diets, other illnesses, etc. that might trigger it again. I've had 2 occurrences and my PMR has been in remission almost 2 years now. Have you made any changes like adding more anti-inflammatory foods to your diet?

I still get colds but not very often and I do get a flu shot every year now. I also am extra vigilant with washing my hands during the cold season doing "fist bumps" instead of hand shakes if a person has a cold ☺

Hello, I had a serious sinus infection that lasted an entire year. Finally in July 2019 I had surgery and much better now. Funny thing is that I tested negative for all allergies and they couldn’t understand where it came from. Hindsight, I think it was attributed to my failing autoimmune system. Last week, my blood work finally showed elevation in C reactive and my RA finally feel better about diagnosis of PMR. I opted to take 800mg of ibuprofen instead of steroids. Now, granted, it doesn’t get rid of my pain as well as the steroids but my mobility has been great! I can take up to 2400mg /day but I take less. I’m able to workout and so all sorts of physical activities which is great!

@asklizzie, It's good to hear that you able to treat your PMR without the steroids and get rid of most of the pain. Have you discussed the long term use of ibuprofen with your doctor? From what I've read, regular use of ibuprofen may eventually cause kidney and liver damage, bleeding in the stomach and bowels, and increased risk of heart attack. More information from Harvard Medical School site:

Heart-safer NSAID alternatives
-- https://www.health.harvard.edu/heart-health/heart-safer-nsaid-alternatives

Hi @zaa, Thank you for the private message and the kind words. I hope you don't mind but I thought I would respond to your private message in this discussion - After PMR and return to good health so that other members may benefit from our conversation.

Sadly my answer to your question if I have seen my muscles come back from riding my exercise bike is that I know the exercise is good for me but I am still losing muscle mass and have not seen it get better. From what I've learned about building and adding muscle mass I think I need to do more strength training exercises as well as the cardio that the exercise bike provides. I did find a good article that sums up how we can help ourselves.

HEALTHY AGING - Building muscle after 60: https://seniorplanet.org/building-muscle-after-60/

One item that I added to help me at home is a Teeter FitForm Home Gym - https://teeter.com/product/fitform/. What I like about it is that it doesn't take up a lot of room and comes with an app for your tablet or phone that gives you videos on how to exercise specific muscle groups. I haven't been using it lately as much as I should but I'm a work in progress and know that I have to make it part of my daily routine and not just use it when I feel like it. I'm more concerned about my arm muscles and strength as I need them more and more every day.

I have the same concern that you have about falling. I would love to be able to ride a normal bike again but I just don't trust my balance. I have thought about one of the 3 wheel bicycles, either the recumbent style that is low to the ground or the old style bicycle that is standard height. That would solve the balance and falling issue (I think) but I'm not sure I would get out and use it as much due to Winters and the heat of the Summer. The last bone density scan I had was in 2017 and I think I need to talk with my primary care doctor and schedule another one next year at my annual physical. The one in 2017 showed I had osteopenia and my 10 year risk assessment of falling and breaking or fracturing was 9.1% for major osteoporatic and 2.4% for a hip fracture.

When my PMR is in remission I am off of prednisone so I think that is the definition of remission is when you are able to stop taking prednisone and no longer have the associated pain.

I know that you want to get outside and ride your bike more but are worried about balance. Do you like to walk? I used to love walking but my lower back and my forward leaning posture makes it harder for me so that I'm only able to walk for a short amount of time or distance without resting. I have invested in some inexpensive Nordic walking sticks that they help with the balance and my ability to walk more upright but I still get tired easily.

Thanks John. Maybe I’ve reminded you then to get on your exercise equipment today and eat nutritiously. I’ve taken gluten out of my diet and working on the auto immune diet which has been interesting. I’m sad to hear about muscle building but I’m going to do what I can. Really miss being with my biking friends!

I was diagnosed with PMR in April 2022. Took Prednisone for 15 months and am now in remission. Since PMR is an autoimmune disease, I am curious about my autoimmune system. Is there a test to tell me that my autoimmune system is back to working normally? I still don't go out much, and am afraid of crowds. Am I more likely to get sick by being in crowds or being around little kids? I see references to an autoimmune diet? Is there something I can do to keep myself healthy? I have a doctor appointment at the end of the month and would like to have as much information as possible so I can ask her appropriate questions. Thanks.

Very good questions and I wish I had an answer. One question I have is how I can stop this from happening again. There are many books on autoimmune diets and cooking, but not specific for PMR. they seem to think the nightshade vegetables are no problem, so you need to read this recipes carefully to catch this. Also, keep away from salt and sugar is not a bad start.
There seems to be very little research into PMR, at least in America. I know it is a really bad problem in the UK and I am relying more and more on the National Health Service web site for help. When it's powered up I will search my kindle for the titles of the autoimmune recipe books I have and get back to you.

I follow the anti-inflammatory eating pattern based on the Mediterranean diet. Limit alcohol and very little
meat and gluten avoidance. Doing dry January to see how that feels.
I believe very strenuous exertion was a factor in my PMR onset. Now moderate 5 days a week. Stretching,
Yoga and easy machines for me. Walk after dinner when you can. Moderation likely strengthens our immunity.
I will ask my primary to check my sed rate and CRP
even though I’m feeling well.
I will mask on airplane this winter. Otherwise fine with
normal exposures and up to date vaccines. Vitamin D
is important year round. Enjoy your friends and family.

@seniormed. I also had to moderate my activity. I had scale it way back. I was waking 5-6 mi 4 times a week and it exacerbated stiffness and pain in my legs. I walk about 3 miles a week now and do a lot of stretching. I’ve eaten a clean diet most of my life so I think it contributed to my progress. I had a physical in early Jan and my EKG and overall lab results numbers really good. (I’m 79 and 2 months). I can’t remember my CRP number off hand, but my SED rate was 8. Lifestyle and moderation are key.

I had a very strong immune system prior to my mild case of PMR. I think I had one cold/flu in 30 years! I was on a low dose of Prednisone for about a year. I've been off of prednisone for a year now and feeling healthy once again. My only issue is vasomotor rhinitis when I am reclined. Note I am a registered dietitian and eat a whole foods organic diet, low in grains and animal protein and high in anti-inflammatory vegetables. You might call it a Pegan diet (paleo-vegan), but I do eat a little fruit pie on occasion and I eat oats every day. When you eat a whole foods diet, fiber comes along with it and I believe that this is THE most important nutrient lacking in the American diet. Fiber feeds our gut microbiome and our gut microbiome protects us from diseases. Seventy percent of our immunity happens in our gut. The ultra-processed American diet is killing this country and as it spreads throughout the world with fast food chains, the health decline is obvious. We are the most chronically ill country in the world and we spend the most per capita on healthcare! Please take good care of yourselves and don't depend on a pill to cure your ailments. Hope this helps someone.