What is the root cause of PMR? Is it contagious?

Posted by debbiev311 @debbiev311, Sep 23 2:31pm

Has anyone gotten an answer as to what their PMR is caused from? The root cause? Have a diagnosis but no explanation as to what is actually causing the inflammation. Don’t want to be on Prednisone for life.

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

Husband is believed to have PMR and on 20 mg prednisone. I am wife with lymes disease. Very concerned that husband’s symptoms can possibly be transmitted to me via sex or saliva from kissing. Case in the past had been detected prior with husband and wife. Seeing if this has been studied prior? Looking to gain insight if this is something to be concerned of.

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Welcome @debbiev311, You are not alone, no one likes to be on prednisone. I don't have any medical training but I don't think they are able to determine what the exact cause for PMR is. Here's some info on the topic.

"The cause of polymyalgia rheumatica is unknown, but a combination of genetic and environmental factors is thought to be responsible. Polymyalgia rheumatica is an age-related condition. Most people diagnosed with it are over 65, and it's very rare in people younger than 50. It's also more common in women than men."
-- Polymyalgia rheumatica - NHS:
https://www.nhs.uk/conditions/polymyalgia-rheumatica/
I saw that you also asked a question in another discussion, is PMR contagious. I don't think it is contagious but I did see an older reference from 2012 about a married couple with both having PMR and thought to be from environmental causes.
-- Polymyalgia rheumatica in a married couple:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3430115/
You may want to scan the different discussions in the PMR Support Group to see if any of them might be helpful for learning more from other members experiences. Here's a link to the discussions in the PMR Group - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

Have you discussed your concerns with the rheumatologist to see if there may be some alternative steroid sparing treatments?

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My rheumatologist was very honest in telling me that they do not know what causes rheumatological diseases....... and no, I'm not kidding that she told me that, especially PMR.

If you quickly Google "what causes rheumatological conditions", web sites tell you that experts do not know what causes most rheumatic diseases. There is some thought that conditions could be hereditary, caused by trauma, infection, environmental triggers, etc. A lot of people are convinced it started with various vaccinations.

To me it appears to the (bad) luck of the draw. I still wonder with all the new research, why we are still a bit in the dark ages........

I've quit asking "why me?" and understand I am at my "new normal". Luckily I am able to do the things I've always done, albeit at a bit slower pace, listening to my body when I need to slow down a bit and am working diligently on tapering off Prednisone.

I do not personally know anyone with PMR, so I have no direct comparison of how I am doing versus an acquaintance. I've been following this group since July 2023 when I was diagnosed and have strong empathy for those that that are in struggling to find relief.

Best of luck in traversing through this unwanted journey.

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you will also find many that believe diet is the cause. A more sugar free diet seems to help some. I would say that PMR does not have to be this crippling disease that you cant get over. I think you try to eat better and exercise as best you can. Try to reduce stress. The disease itself will burn out and does not appear to leave any permanent disability. Mine took about 6 months. I know others are longer. The real issue is the corticosteroids. They work great at relieving the symptoms. Not cure but relieve. In a short amount of time you will be unable to stop taking them. I suggest you digest as much information as possible on "prednisone and adrenal insufficiency." Prednisone makes you think the pain is PMR when in most cases its the lack of cortisol. As long as you understand prednisone it can be managed.

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No one knows for certain the “root cause” of most (all? Dunno, not an expert) autoimmune or inflammatory conditions but that something flips a switch and causes someone’s immune system to turn on itself. It’s hypothesized that a genetic predisposition can create the potential for an autoimmune condition, but anything from chronic stress, to hormones, to a viral infection, environment, etc. can flip that switch.

Since PMR primarily affects older people, there could be something about the way it manifests that makes older people (who also don’t have as strong an immune system) more susceptible.

At least as it was explained to me (I have intetwined conditions believed to be autoimmune), it can happen to anyone. It may be more likely to happen to people under chronic stress, whether that’s physical or emotional or any kind of stress, but it’s not exactly something you can stop from happening or catch from someone. At least, that is how my inflammatory and autoimmune conditions were explained to me.

It’s sort of like…I have “symptomatic hypermobility.” Not everyone with hypermobility develops chronic pain and systemic health problems—some people are simply hypermobile and go on to have a normal life. Still others are hypermobile and develope EDS (Ehlers Danlos Syndrome) and have more serious health problems and we don’t know why. A gene or the environment can create the potential for it happening; some things might make it more likely, but it’s not a guarantee.

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@johnbishop

Welcome @debbiev311, You are not alone, no one likes to be on prednisone. I don't have any medical training but I don't think they are able to determine what the exact cause for PMR is. Here's some info on the topic.

"The cause of polymyalgia rheumatica is unknown, but a combination of genetic and environmental factors is thought to be responsible. Polymyalgia rheumatica is an age-related condition. Most people diagnosed with it are over 65, and it's very rare in people younger than 50. It's also more common in women than men."
-- Polymyalgia rheumatica - NHS:
https://www.nhs.uk/conditions/polymyalgia-rheumatica/
I saw that you also asked a question in another discussion, is PMR contagious. I don't think it is contagious but I did see an older reference from 2012 about a married couple with both having PMR and thought to be from environmental causes.
-- Polymyalgia rheumatica in a married couple:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3430115/
You may want to scan the different discussions in the PMR Support Group to see if any of them might be helpful for learning more from other members experiences. Here's a link to the discussions in the PMR Group - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

Have you discussed your concerns with the rheumatologist to see if there may be some alternative steroid sparing treatments?

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Thank you very much for all the insight. Greatly appreciate it.

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@tuckerp

you will also find many that believe diet is the cause. A more sugar free diet seems to help some. I would say that PMR does not have to be this crippling disease that you cant get over. I think you try to eat better and exercise as best you can. Try to reduce stress. The disease itself will burn out and does not appear to leave any permanent disability. Mine took about 6 months. I know others are longer. The real issue is the corticosteroids. They work great at relieving the symptoms. Not cure but relieve. In a short amount of time you will be unable to stop taking them. I suggest you digest as much information as possible on "prednisone and adrenal insufficiency." Prednisone makes you think the pain is PMR when in most cases its the lack of cortisol. As long as you understand prednisone it can be managed.

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Did you mean able instead of unable?

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Has anyone's internist recommended cannabinoids for PMR and withdrawing Prednisone? I do not see any mention of cannabinoids by patients in all of the PMR threads! Thanks!

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@jeannewa

Did you mean able instead of unable?

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No meant unable. Not preaching here but only explaining. Generally after about 2 weeks your body stops making cortisol. Cortisol is being supplied by the prednisone. When your body stops making cortisol you can no longer function without the prednisone. Dr's attempt to taper you off the prednisone to allow your body time to restart. The longer you are on steroids and the amount you are taking can be big factors in how long this takes. PMR unfortunately can take 6 months to years to burn out. Some may not ever restart their cortisol and need to take steroids for the rest of their life. So my comment was in short amount of time( 2-3weeks) you will no longer be able to just stop taking prednisone. The longer you take them the harder it gets to stop.

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@bostonredsox1945

Has anyone's internist recommended cannabinoids for PMR and withdrawing Prednisone? I do not see any mention of cannabinoids by patients in all of the PMR threads! Thanks!

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Prior to the recent PMR episode, during years of Chronic lower back pain, including 3 failed surgeries; I studied Cannabis versus Opioids at a college and online university sites. I chose my strains of Cannabis not for the "High" but by what Terpenes were inclusive and the percentage of which was for what purpose. I discovered at that time the CBD is more present in the Lessor THC strains, but may have changed by now with all the new Hybrids? Since my gift of an Abbott Spinal Stimulator Implant, I have not partaken in use of Cannabis for years now, but was also interested as you, once I endure the Prednisone intake. I will post the study below for your request of info and let you conduct your research for end decision.
Best Wishes

Prednisone and other corticosteroids are inhibitors of the cytochrome P450 enzyme CYP3A, which affects how the liver metabolizes materials. CBD is another potent inhibitor of these enzymes, potentially leading to higher blood levels of prednisone and longer times that the drug spends in the body per dose.

This is why it’s wise to consult your physician before combining CBD with prednisone. Depending on your dose and medical condition, they may recommend taking the medications at different times or avoiding CBD altogether.

There may also be an increased risk of bone fractures if long-term prednisone is paired with heavy cannabis use. The long-term use of corticosteroids has decreased bone density, leading to osteoporosis. Similarly, a 2017 study reported an association between heavy cannabis use, low bone density, and increased fracture risk.

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