PMR appears in people with Commonalities, by chance?

Posted by Howdy! @kereno, Aug 17 3:30pm

Sometimes I wonder if the diseases that pick us are related to our past history or current lifestyles—or just environmental factors? It would make an interesting study. I first noticed this when my late husband had a flare up of polio after a 40-year hiatus. It affected both his legs on the 2nd go round instead of one as was his original experience. Then later, when he developed Parkinson’s, several of his classmates (they kept in touch) fell to it too. Finally in my caregivers’ group as we got to know each other, one lady remarked, all of our husbands are “controllers” in their professions (engineers, scientists, dentists, businessmen)—close detail work. In our PMR world, I think of all the gardeners and athletes among us—physically hard working types who probably push past their limits fairly frequently. Could that be a cause or correlation? Did any of you share my bad habits of drinking wine (frequently) as an adult, or did you drop acid or smoke a lot of pot when you were a teen? What if this is an after-affect? I also smoked straight cigarettes as a young g woman. Not prying…just curious. No need to answer. Obviously not cause and effect, but maybe a close correlation? 🤔

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

I smoked cigarettes for 10 years when I was young. I also experimented with drugs and alcohol, since I came of age during the late 60s and early 70s. Eventually I stopped the bad habits and got into running. After some time I became a national class runner for a few years. I trained so hard at times that I couldn't sleep at night from the cortisol left over from my workout that day.

An additional possibility in my case is that I had a lot of trauma as a child. I've read that childhood trauma is associated with the later development of autoimmune disease. It makes sense to me. Trauma can rewire a child's brain, and cause the nervous system to become hypervigilant. If the nervous system is overly active, it seems reasonable that the immune system is also overly active.

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That is interesting! I also had childhood trauma and ‘hyper vigilant’ is a good description. I was put on sleeping pills at 4 years old. I also have always had a lot of allergies—the full gamut of environmental intolerances. Over reactive. Over achiever. That makes sense. Anybody else want to chime in?

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I am a gardener. Yet, my PMR were related to Covid vaccines boosters shots plus some other mental and physical stress at the same time. I did not stop working in my garden during recovery of PMR. It actually helped as long as not over doing it. Being in nature keeps me happy and alive.

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I engaged in all the 'bad habits' during my youth, at the same time, being a very good athlete. I've always had a bad memory, which I attribute to the brain cells I damaged at that time. I was diagnosed with PMR/GCA at 68 yo, July 2024. Up until then, I would go 110 mph. I took up trail running at 62 yo, although it was short lived! Most comments that I got from friends and family were, "this must be so hard for you, since you've always been very active".

I have this nagging thought of how my PMR began, but I can't prove it. In Jan 2024, I went to a chili cook-off and craft beer festival. I'm a foodie, so I had to try ALL the chili's. I did drink in moderation. A few days after the cook-off, I began having upper and lower GI issues. I attributed it to the chili cook-off. My symptoms got worse. It felt like someone kicked me in the stomach. I would spend days laying on the couch, not able to do much. I went to a GI specialist. I was scoped in both directions. All the diagnostic tests were negative. They couldn't find anything wrong with me. In hindsight, I should have requested bloodwork. I don't know why the doctor didn't order any. I had symptoms until the end of March, when they just went away. That's it.

Since then, I have read that the gut is a pathway to your system. I keep having this nagging thought that the month's long episode with GI issues was the trigger for my PMR. I'll never know. I am now 4 mg. of Prednisone and take monthly infusions of Actemra. I'm 100% better than last summer, but only 50% of my original baseline.

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Profile picture for ropnrose @ropnrose

I engaged in all the 'bad habits' during my youth, at the same time, being a very good athlete. I've always had a bad memory, which I attribute to the brain cells I damaged at that time. I was diagnosed with PMR/GCA at 68 yo, July 2024. Up until then, I would go 110 mph. I took up trail running at 62 yo, although it was short lived! Most comments that I got from friends and family were, "this must be so hard for you, since you've always been very active".

I have this nagging thought of how my PMR began, but I can't prove it. In Jan 2024, I went to a chili cook-off and craft beer festival. I'm a foodie, so I had to try ALL the chili's. I did drink in moderation. A few days after the cook-off, I began having upper and lower GI issues. I attributed it to the chili cook-off. My symptoms got worse. It felt like someone kicked me in the stomach. I would spend days laying on the couch, not able to do much. I went to a GI specialist. I was scoped in both directions. All the diagnostic tests were negative. They couldn't find anything wrong with me. In hindsight, I should have requested bloodwork. I don't know why the doctor didn't order any. I had symptoms until the end of March, when they just went away. That's it.

Since then, I have read that the gut is a pathway to your system. I keep having this nagging thought that the month's long episode with GI issues was the trigger for my PMR. I'll never know. I am now 4 mg. of Prednisone and take monthly infusions of Actemra. I'm 100% better than last summer, but only 50% of my original baseline.

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I have some gut issues now, and I've had worse ones in the past. I don't know if they contributed to my GCA and PMR. I've had hypothyroidism for about 20 years. About 10 years ago, I developed SIBO, small intestinal bacterial overgrowth. I think it developed due to low stomach acid caused by the hypothyroidism and also age. I was pretty miserable for a while. I never got medical treatment for it. I found the FODMAP information online, and used food elimination to eventually cure the SIBO. I still have IBS left over from that time. I can control it pretty well with diet.

PMR and GCA are probably due to different events that accumulate over time, and something eventually tips us over into sickness.

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I have gone silent for several weeks/months because I have had other priorities. This post made me post again - without question lifestyle choices will forever influence our challenges. This is not up for debate as much as it is a fact. Twenty years ago I was Dx with breast cancer and this became real to me. We are the result of what we expose our bodies to - eat, inhale, inject, absorb, etc. Emotional health is known to be reflected in our immune system. What is in the air we breath is reflected in the reactions our body has, simple case is seasonal allergies. Our bodies are a series of very complex subsystems that need certain things and are challenged by other things.

When I was first diagnosed with breast cancer 20 years ago I went on an all-out search for lifestyle changes I could make to reduce my chances of a recurrence. I discovered that food additives were biggies as were non-GMO, but so were environmental chemical both inside buildings and in the open air. I decided that if I wanted to maximize my lifestyle changes, I was going to need to move to an uninhibited isolated island and learn to live so far off the grid it was laughable.

Every decision we make to any form of bodily abuse will incur consequences. Over exercise is abuse but so is under exercise. Same can be said for eating, sleeping, and even life experiences. Living is a tradeoff of cost, benefits and risks. I refer to this as looking for the Goldilocks zone. I learned this at 50ish. Balance is key with keeping both long- and short-term goals in mind. No one promised us simple.

My PMR journey has been 6 years and I am still struggling to find the magic bullet to quell my "PMR" pains. I divide my life into two categories, pre-PMR and post-PMR because PMR has been that dramatic of a life changing challenge for sure.

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Nothing too unusual in my background except I had a previous diagnosis of inflammatory arthritis with uveitis for about 15 years before PMR was diagnosed. I was diagnosed with reactive arthritis which derives its name from a reaction to an infection. In my case, it was probably a GI infection acquired during a visit to Romania in the early 1990's. I had a genetic predisposition for this kind of problem.

I took a high dose of Prednisone for flares of uveitis which is associated with reactive arthritis. An ophthalmologist prescribed Prednisone in massive amounts for uveitis so I wouldn't run out. My usual starting dose was 60 mg and increased to 100 mg as needed. When uveitis responded to Prednisone, I tapered off in 45 days or less. This process was repeated for 30+ flares of uveitis. Roughly an average 1 or 2 uveitis flares per year for 20 years. What no doctor knew was how much Prednisone I took for all kinds of pain caused by inflammatory arthritis. I never complained about the arthritic pain because it always responded to Prednisone too.

I also had an unrelated condition called trigeminal neuralgia which is nicknamed the "suicide disease." There was no amount of Prednisone I wouldn't take for that pain.
https://www.sciencedaily.com/releases/2006/04/060406231921.htm#:~:text=04/060406231921.htm-,Known%20as%20%22suicide%20disease%2C%22%20trigeminal%20neuralgia%2C%20or%20facial,patients%20can%20avoid%20inappropriate%20treatments.
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I mostly self medicated all of the above with leftover Prednisone prescribed for uveitis. I think the common denominator to everyone with PMR is stress. All the pain I had caused a lot of stress

After PMR was diagnosed I was unable to taper off Prednisone for 12 years. I'm glad I was diagnosed with PMR because until then I was winging it with Prednisone the best that I could.

I'm convinced my inability to taper off Prednisone after PMR was diagnosed was caused by Prednisone itself. It started to make sense to me when a person who had an adrenal crisis explained it to me.

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I'm a retired highway patrol sergeant, 27 years of service. I have never smoked anything, but did drink alcohol on a regular basis. Three years ago we decided to move from one state to another. Escrow fell out twice and on the second time we were notified after our moving truck had just left with all of our belongings. After a stressful career and an even more stressful move I attribute my PMR to stress. I have been retired for 10 years, but still seem to find stress quite frequently.

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I am very certain my PMR was triggered by the first shot of the Shingrix vaccine. I am not an anti vaxxer but not all vaccines are equal. 5 days after it the pain descended upon me w a vengeance. 2 of my 3 Drs sheepishly concurred. To have had my life totally upended by something that people kept telling me I really should get is beyond ironic. It makes perfect sense that my immune system overreacted. I just want to find the balance again but in the meantime I got Lyme that went misdiagnosed for 9 months, Covid w hair loss and fell and fractured both feet ( my bone density is fine and I healed well) WTF was this year about?? Lol I’m starting DNA testing and will let you know if it unlocks any keys to healing. I’m grateful for prednisone but enough is enough!

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I think PMR, like many things, is due to a combination of nature and nurture. My mother had PMR during a stressful time in her life. My grandmother had PMR during a stressful time in her life. They called it bursitis, but the symptoms were identical to what I experienced. My grandmother died before prednisone was available and suffered the rest of her life. My mother took prednisone and never had another problem. I came down with it during a physically stressful time and the prednisone knocked it out. Now that I have tapered off, some soreness has come back. No relation to what I have ingested or vaccines or trauma. But maybe for some people there is a correlation. We all seem to be different.

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