COULD PMR BE A PHENOMENA OF THE GUT?: Hi. I have... - PMRGCAuk

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COULD PMR BE A PHENOMENA OF THE GUT?

Pmrsurvivor1
Pmrsurvivor1

Hi. I have posted messages here in the past and want to offer a personal opinion on PMR and a possible explanation for how it may be caused. Let me say up front I have no medical training and I am not trying to sell anything. I have simply lived with PMR for 5 years and had it go away once and come back and now its gone again. Im a 49 yr old male and not the typical demographic for the condition but I got the classic dose of it, horrible symmetrical shoulder pain and general stiffness and creeping malaise which evolved over a few weeks into full blown raging pain all the time and I also got the classic response to a 25mg dose of pred, within 12 hours of my first dose I felt completely perfect, I did the usual taper down, with a few false dawns and having to go back up etc. I read a lot of what others have said and I have studied this disease "from the inside" by living with it for 5 years and I have formed my own conclusions, I offer them here for what they are worth. Doctors will freely admit they don't know what causes PMR other than that it is an autoimmune condition where your own immune system is over-reacting to some unknown trigger, thereby causing muscular /tendon inflammation. They will also tell you it usually self limits and goes away after a few years particularly if it is managed properly. I have found a lot of people anecdotally say that they developed PMR after having had Epstein Barr virus (glandular fever) or mono nucleosis, other people say they got it after having had a different virus. The following is my own best theory(completely untested and unproven I hasten to add). I believe it isn't the viruses that are the direct cause of the PMR, I believe it is the medications people took for extended periods of time while they were ill with those viruses, usually to control their pain or to lower their high temperature. I'm talking about analgesics and anti inflammatories like aspirin ,paracetamol and ibuprofen. I believe these medications, although wonderful for short term issues, if taken over a prolonged period of perhaps a few weeks, can, in some people, create intestinal permeability,(sometimes conflated with a syndrome called leaky gut which is somewhat controversial and may or may not be real), however intestinal permeability IS real in some form. I believe the intestinal permeability allows certain food proteins to cross the gut barrier into the bloodstream triggering auto immune responses. I think the reason PMR eventually goes away is because the gut wall heals itself. Wheat and gluten are particularly big offenders and anecdotally loads of PMR sufferers have noticed it, I myself found that when I was down to a low dose of pred, eating white bread or other sources of gluten caused my pain to flare up within half an hour, I also found that for some reason tea and coffee also had the same effect. Although PMR is a mystery, it seems the two things that do come up again and again is people saying they recall having a virus before it, and finding that certain foods make it worse once they have it. It seems hard to avoid the possibility that it is a phenomena of the gut. I also had another strange thing happen recently. I went on statins for cholesterol, and started taking a Q10 supplement because I read that it helps avoid some side effects of statins. 2 weeks after taking the Q10 every night, my PMR went away completely. it may be a coincidence and it may be that my PMR was more or less due to clear up anyway after such a long time, but I do wonder if the Q10 was helping repair the intestinal permeability thing. I am not trying to flog Q10 and it may have nothing to do with it and I have not seen any literature connecting Q10 to gut health either, but I just want to mention it. Please think about your own PMR history, were you sick before you got it and did you take a lot of medications for a period of weeks? do you find certain foods make your PMR worse? I would be very interested to hear if any of this resonates with other peoples experience. if you think it does, then investigate ways to heal your gut, and avoid foods that make you worse. if you think the types of medications I have mentioned above(and note I am not mentioning brands, just their generic names) may have featured strongly around the time you got sick(or just before it), let us know. please do not take any medication based on this post and please do not quit any medication based on this post, only your doctor can advise you on that, just think back and offer your thoughts and recollections. good luck to all and remember....it goes way eventually.....

124 Replies
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PMRpro
PMRproModerator

I do have to offer up a lot of "No" responses to your points I fear. Especially to the medications ones - no pharmaceutical company made money out of me pre-PMR!

"They will also tell you it usually self limits and goes away after a few years particularly if it is managed properly." - do they ever say what is "proper management"? Pred has no apparent effect on the underlying disorder - it just manages the symptoms.

"it goes way eventually." - what is eventually???? I'd love to know.

Pmrsurvivor1
Pmrsurvivor1
in reply to PMRpro

thanks for your reply. I am exploring a theory that's all. is it possible that you had another source of gut trouble that might have had the same effect as those meds? a food intolerance or IBS or anything else?As regards when it goes away, as far as I have learned it can be in as little as 2 years or as many as 6 and you are right to say pred doesn't heal it, it just manages symptoms, my own Dr said that if the dose of pred is not kept just high enough to keep all symptoms at bay, the condition takes a very long time to get rid of, pred needs to be slightly above the pain not slightly below it, so correct tapering and going back up again if necessary is really important .

PMRpro
PMRproModerator
in reply to Pmrsurvivor1

"as many as 6" - another anomaly. I had had PMR symptoms for 5 years pre-pred and it never went away in that time. Nor since. 15 years and counting ...

The then local coeliac consultant hypothesised I may suffer from leaky gut syndrome - at the time an unusual opinion from a mainstream medic, I definitely had a problem with wheat starch - not gluten and I went gluten-free soon after the first signs of PMR appeared in order to be wheat-free. It made no difference and still doesn't.

Pmrsurvivor1
Pmrsurvivor1
in reply to PMRpro

I meant to say that it may go away after 6yrs if the sufferer is treated with pred during that time and if the pred dose is always sufficiently high to supress the pain, my Rheumatologist has said in his clinical experience, if its not supressed it never ever goes away so the pred regime and dose and taper is all critical. so possibly the 5 years you had pre-pred maybe don't count as "time served" for this reason.

Pmrsurvivor1
Pmrsurvivor1
in reply to PMRpro

personally I found going wheat free did not make my PMR go away but eating wheat when I was on a low dose of pred definitely made it come raging back with a vengeance , so the relationship may not be a simple binary one of wheat= pmr, no wheat = no pmr. The gut or immune system may be quick to react negatively to the presence of wheat but very slow to recover after its gone, after all ,other injuries work the same way, being hit by a car means a broken leg, taking the car away doesn't mean the leg instantly heals. its just an analogy but I hope you get my meaning. in any case conversation doesn't hurt and may yet reveal a pattern of useful info

IslandRN
IslandRN
in reply to PMRpro

Thanks Pro! My PMR symptoms are not impacted by what I eat or drink...admittedly I did eat rather healthy pre PMR and continue with same post PMR-limiting (not eliminating) bad carbs 5 days/week and indulging in pretty much whatever other 2 days. I would be more miserable if I had to do away with a few peanut M&M's, Fritos and a beer or glass of red wine a few days a week 😜. I walk/jog about 30 miles a week so managed to not gain any weight while on prednisone...currently on 7.5 and doing a very slow taper with reducing 0.5 mg every 45-60 days contingent on my symptoms being controlled by 70-80% which is my baseline. I value you and the other mods who have been on the PMR journey for so many years so much as your advice is spot on.....as stated over and over its a marathon not a sprint! Long term, inflammation (PMR) not managed appropriately will ultimately win out and result in a flare so snail 🐌🐌🐌approach it is for me 😜

Blearyeyed
Blearyeyed
in reply to PMRpro

Yes , I'm the same wheat , not gluten.

My Digestive Conditions have always been an issue and yet I have always had a well balanced diet.

Part of the reason that it took the Doctors nearly two years of leaving me in Pain from Gall Bladder issues was because I was just too " Fit" and did not " Fit" into any if the boxes to have a problem with it. When it was finally removed , they were shocked by the state of it.

I have been conscious of maintaining Balanced Bioflora since those problems began and long before it became a Health Trend . It might have made my Symptoms less Severe but it didn't , and wouldn't , have ever " Cured" the problem. The problem has always been Systemic and connected to Neurology and my Genetics.

I was also too " Fit" to have all of the Body issues I have , my " Fitness" seems to have been a Curse in reaching a Diagnosis to my poor Doctor's for years. All the poor dears could do was reach in desperation for the Anxiety card , until they had to confess I was so Well Adjusted.

I was told until recently ( when I have been less able to exercise) that I had the Muscle Tone of a 22 year old , that probably saved me many more issues earlier on , but it also caused years of additional uncontrolled Pain and misdiagnosis because nobody considered looking for a less common cause.

There were many years when I lived a happy , healthy balanced Life without the use if Medication of any sort . In theory , that should have stopped the rot , unfortunately it has not.

Ironically, it was looking after myself and my General Fitness that meant I was misdiagnosed for most of my life , and nobody considered that I had Ehlers Danlos and Dysautonomia , which has inevitably been the root cause if it all.

Yellowbluebell
YellowbluebellModerator
in reply to PMRpro

Your 15 years of "eventually" must be like a sentence for murder then?

PMRpro
PMRproModerator
in reply to Yellowbluebell

Not in comparison with 46 years of marriage ... ;)

Yellowbluebell
YellowbluebellModerator
in reply to PMRpro

Dont split hairs!!!

PMRpro
PMRproModerator
in reply to Yellowbluebell

:)

MaryA_
MaryA_
in reply to PMRpro

You’re too funny 😂. I do like your advice though! Yes, you are a PMR pro. maryanne

49.5 here

Yellowbluebell
YellowbluebellModerator
in reply to pugrescue

I am still a baby compared to you and pro. Only 30 years of marriage and 18 months of pmr. Tbh he has been very understanding most of the time but has had more than his fair share of moments where i have had to fight the urge to smoother him!!

49.5 marriage and just 11 months of GCA.....you do the math LOL......completely understand the "smothering"

Yellowbluebell
YellowbluebellModerator
in reply to pugrescue

I sometimes think its only the thought of my own colleagues defending me in court thats stops me actually using his pillow on him!!xx

IslandRN
IslandRN
in reply to PMRpro

😂😂😂😂😂😂

DadCue
DadCue
in reply to PMRpro

I have 36 years of marriage and 30+ years of PMR and other stuff. Now I know what caused it!

DadCue
DadCue
in reply to DadCue

However, I probably would not have survived without my better half--- BH not OH

Yellowbluebell
YellowbluebellModerator
in reply to DadCue

You had probably not let her see this first response although you do dig yourself out of your hole with your next response!!

Thelmarina
Thelmarina
in reply to PMRpro

😂😂😂

for anyone who wants to read about it this is the Wikipedia page on intestinal permeability en.wikipedia.org/wiki/Intes...

scats
scats
in reply to Pmrsurvivor1

I have read several articles about leaky gut and have found them interesting. I have even acted on some of the advice given.

The problem you have is that without specific data you can only speculate. Someone will have to be being monitored when PMR is diagnosed if you are ever to have the evidence. Even then it will only be the one person and not conclusive.

I feel that this is unlikely to be proven.

Pmrsurvivor1
Pmrsurvivor1
in reply to scats

the correlation to certain drugs may not be established but even if there was a significant chorus of people definitely noticing a correlation to it being aggravated by certain foods, that would help point a way forward. I have seen on other chats people talking about different wheat in different countries seeming to not affect them and when they come home they get an immediate reaction to the home product and they are speculating about pesticides and weedkillers etc being used on wheat in some jurisdictions and not others

scats
scats
in reply to Pmrsurvivor1

In my case I would say there is a definite genetic factor as my father, brother and sister also have it. On the other hand even this could still be coincidence.

I would recommend you find something more reliable than Wiki as your source of any medical or scientific knowledge if you want your opinion to be taken seriously.

Interesting theory. I personally don’t think the medication thing fits. I hate medication and have hardly ever taken meds before.

But I think the gut biome is so poorly understood but has increasingly been shown to important for immune system, mental health etc.

So I agree...the gut could be linked in some way.

I don’t know about the link between analgesics and PMR but I have recently been diagnosed with diverticular disease - very irritating as I have always had a good and high fibre diet. Perhaps too much fibre! Doh!

Do you mean tell us on the forum..... Or tell us in terms of an external body/group interest?

There are papers in the pinned posts that detail what patients believe started pmr. There are post s where people describe the lead up to pmr and gca that pmrpro set up. Perhaps you could/should start there if you are interested in narratives that are just shaped by experience.

bmjopen.bmj.com/content/7/1...

Thank you for sharing this, very interesting.

You may like this one. Scroll down to place where it says download....

eprints.whiterose.ac.uk/85252/

I was just hoping to get comments here to see if there is any pattern that might suggest a correlation which professionals could then explore to see if correlation = causation

It would be really nice if research occurred in that way. Some can if a lot of work is done by a charity to promote and fund research centres with an Interest in the conditions. It is very hard to get funding for such projects and even harder if there's little value to pharma in the potential treatment protocol. The best we can hope for I would think is tagging onto research on biome and analysing how it applies to tbe complexities of pmr gca. Again you need Dr's and scientists to be interested and have the expertise to do so. Sadly, historically, as has been said numerous times, pmr gca has been seen as an old ladies illness so can get the dirty end of the research stick.

But here are some research papers that lustrate specific pmr gca research.

healthunlocked.com/pmrgcauk...

timeshighereducation.com/ne...

York54
York54
in reply to Pmrsurvivor1

Thanks for your input. I enjoy hearing other points of view. I have ulcerative colitis and have been told many times that gut health is really important for our well being. Thanks again 👍👍👍👍

tangocharlie
tangocharlie
in reply to York54

I've read, anecdotally, I can't offer any other evidence, that keto diet is good for UC. It cuts out grains and sugars and is low carb, high fat.

There are so many factors that cause a Disease , Chronic Condition or Syndrome to occur.

Although , the gut can play a big factor in a Disease , so can every other part of the body .

You can fall foul of acting like the Medical Community and spending too much time chasing your own tail by only concentrating on the importance of one part of the body rather than the body as a whole.

As a Sufferer of Chronic Digestive issues I will say that I need both Medication as well as Good Diet to achieve the level of Disease Management that I have now . I tried everything , including the 100% Natural Way . I learnt that when it comes to Complex Health Issues a Complex of Solutions is required .

As , you are just beginning on your investigative journey exploring the possibilities that cause Chronic Illness , I don't want to dampen your curiosity , although you may want to check some of your information about PMR to help in your search.

I have been dealing with Chronic Illnesses for many years now , both as a Sufferer and Carer to others, and there are only two things that I can narrow down the cause to be , Genetics and The Whole Life Lived .

Good to remember that The Whole Life Lived has brought a lot of freedom and joy before felling us! 😅

Absolutely xxx

Thank you for sharing your thoughts and experiences re PMR. I note you ask the members of the forum only to consider the possibility of leaky gut involvement in the cause of PMR. Excellent. This should stimulate further research. As Blearyeyed says there are many factors involved in the cause of disease, chronic conditions and syndromes all requiring complex analysis and solutions.

Coincidentally, I am in the middle of coping with a ‘warning flare’ and I find the very thought of eating any form of bread a total turn off. Interesting,

I hope you continue to be free of PMR .

Lovely idea but I am one of the people who may disprove the rule. I had never had antibiotics in my life until after I was diagnosed with PMR. In fact I had some Dihydrocodeine in 1980 and some junior aspirin when I was a child. So no drugs since 1980.

not antibiotics, just painkillers.

No painkillers since 1980

carolBF
carolBF
in reply to piglette

Interesting, have you ever had flu injections or anything to protect you when travelling ? As my health advisor said my leaky cut was caused by the flu vaccine.

X

Toenti
Toenti
in reply to carolBF

I had mild symptoms for a couple of years, but after a stronger flu shot(over 65) I got full blown PMR. Now in my 5th year and still hoping for the”self limiting” to occur.

piglette
piglette
in reply to carolBF

I last had a flu injection when I was seven years old. I have never taken any medication for anything apart from pain killers in 1980 and junior aspirin as a child. That is until I was diagnosed with PMR when I made up for it! On the other hand I was never ill apart from the odd cold.

Melodyvine
Melodyvine
in reply to piglette

Had you had any exposure to chickenpox or shingles, or had the shingles jab, pre PMR?

Easier, in some ways to be able to ‘blame’ it on something, but, until there is some proven evidence we just have to be content with the idea that some people get it, others don’t, like appendicitis!

piglette
piglette
in reply to Melodyvine

I had chicken pox when I was a child. No shingle jabs though. I think in my case PMR may have been stress. I never had headaches or indigestion which needs medication, no UTIs, it was PMR which gave me everything!

You gave me a lot to think about. I am a 55 year old woman who has had PMR for the last 5 years. I’m am down to 4mg and every time I try to taper I flare up. I found it interesting that you mentioned statins because I recently stopped taking my cholesterol medication to see if it may be the cause. I wonder how many people who have PMR take statins as well.

there is some separate evidence that long term statin use can deplete the body's normal levels of Q10(I think the theory is that statins supress the production of Q10 as a side effect of supressing production of cholesterol) and over time the levels of natural q10 fall and it causes muscle cramps or pains, but these are rather different from those caused by PMR. In some locations (I believe Scandinavia) they prescribe q10 with statins to avoid this problem. anyway, trying q10 it for a month is unlikely to do much harm and might just make a difference that you can measure. I took 120mg per day

I just got some Q10! Thank you!

carolBF
carolBF
in reply to smoothilly

I was diagnosed With PMR 18 months however I have had it for over 5 years.

When I was given statins all my muscles were so weak I couldn’t function.

I now take Raw organic apple cider vinegar (with mother) every morning for the last two years. 1 tablespoon in half pint of water, best with a straw to protect your teeth. And taking this neat is not a good idea if you may have a leaky gut, (which I have) alot of the members at my gym take this for there health

My cholesterol levels went from 7.1, 6.9, 6.1, 5.9

I stopped the cider vinegar for 3 months to see if it had an effect it went back up to 6.4.

This is not advice to stop any medication or to start on apple cider vinegar it is my experience.

PMRpro
PMRproModerator
in reply to carolBF

Some statins have been implicated in the development of PMR - there has been discussion about them on the forum recently in response to a question from MrsNails. I too was almost in a wheelchair after less than a week of a half dose of a statin. Now my notes have a warning that I am NOT a candidate for statins!

Pmrsurvivor1
Pmrsurvivor1
in reply to PMRpro

Your reaction to the statins was obviously real but it may not have been PMR .it may have been the muscle cramps associated with statins. Some people get that reaction with one statin type and when they switch to another they are fine. It may also be that anecdotal evidence correlating statin use to PMR may simply be because the age demographic that typically takes statins is also the demographic that gets PMR , it’s back to the old conundrum that correlation doesn’t equal causation .

PMRpro
PMRproModerator
in reply to Pmrsurvivor1

I already had PMR. I don't care why - I'm not prepared to experiment as it was months before I recovered to the status I had been at the week before. It wasn't cramps, it was weakness to the point of collapse.

However - there are studies that do suggest causation.

Broomser
Broomser
in reply to smoothilly

I was progressing reasonably well, tapering pred (GCA/PMR 1 year). I was put on a statin and experienced what felt like a PMR flare, I went to GP who told me to stop the statin, and symptoms improved. It was statin side effects, not PMR symptoms (which for me were near identical)

I haven't read your entire post but I pretty much know what it says. Thank-you for sharing it. I can only speak from personal experience so that doesn't count I suppose. I have more than one diagnosed autoimmune disorders. I would say the theory has some merit for the onset of my problems. I definitely had a GI issue at the beginning of things 35 years ago. The pain did go away for a period of time but then it kept recurring. It wasn't PMR pain at the time but did involve massive doses of prednisone.

I was diagnosed with PMR 10 years ago. It may have been triggered by an infection but not a GI infection. It was a stressful period of time so that may have been a factor. The only thing I can definitely associate it with was a lack of prednisone. I was going around like a crazy person insisting I needed prednisone.

sorry...I don't fit your model. No illness or medication for years pre-PMR. (The only medication was antibiotics over 15 years ago!) Not even a cold for two years before PMR! I have eaten a sugar-free, almost gluten free diet for at least 15 years.

I found it helpful when a moderator wrote..it is like appendicitis...some people get it and some don't it. I think looking for a simple causal relationship is not going to work.

Thank you for trying to shine some light on the origins of PMR....would not it be great for all of us to figure this out!?

I personally hardly ever took any nsaid s or other painkillers before the onset of my PMR...the only thing I have had for 30 yrs is hashimoto disease.

..

My PMR started after my Friend I looked after died, which of course can be coincidence as well, who knows. Please continue your investigations, who know what you discover! Kind regards.

I have PMR and so did my mother. When I was diagnosed friends etc brought up all sorts of reasons why I may have the condition, from dealing with sprays ( very rarely) to digestive issues to insomnia to alcohol to a complicated life history, and so on. However my mother led a very quiet life, never touched sprays or alcohol, could eat anything even up to the age of 94, etc. The one factor we had in common was that in the months before PMR emerged we were stretched to the limit caring for and dealing with the death of a loved one. ( for me, it was her illness and death). I have come across similar stories. So, extreme stress. Although there may be many triggers, I would think that seems a likely one.

PMRpro
PMRproModerator
in reply to Tiredcat

Stress certainly makes PMR worse!!!!!

I can relate to the emotional stress aspect, i also had that, but I think it’s role is that it weakens us and that it contributes but maybe isn’t the primary cause

PMRpro
PMRproModerator
in reply to Pmrsurvivor1

Stress does have an effect on the immune system - and repeated insults to the immune system will eventually "break" it, doesn't matter what they are, they mount up.

DadCue
DadCue
in reply to Pmrsurvivor1

Think HPA axis. That accounts for most of it ... I believe.

I think it helps everybody to get a better idea of the Full Definition of Stress . Its often not understanding what the Meaning of Medical Stress is that causes the confusion and resistance against seeing its Primary Role in our Health.

This is what I meant by the Whole Life Lived .

Stress is Activity we put the body under that it finds too difficult to cope with or sustain. It's Physical and Mental , but most importantly , the thing People forget , is that it isn't all Negative , it's Positivity , Everyday Activity and Emotion too.

All elements of Life , Chemical , Physical and Emotional over Decades combine to make us more susceptible to Illness of any sort , both Acute or Chronic.

If you have been living for 5 decades , it's 50 years of imbalance that will have affected your Health not just the 5 years before you became unwell.

Anything that happens just prior to your Change in Health is just the straw that broke the Camel's back.

The more Wear and Tear , the more susceptible we become to any condition that we have a higher probability of catching or developing. The Probability of developing a Chronic Illness rather than an Acute one is increased with Genetics .

I think part of the problem people discover when they search for a cause , or set of reasons, for their illnesses is that they are searching in the wrong places.

More often than not , people try to impose the same rules to understanding short term Illness onto the Chronic World they are now part of and this never gives an accurate conclusion.

I agree totally Bee. Two different animals. I have read 100s of posts that make suggestions or try to impose a causative narrative on illness. As a way of dealing with their illness that's not a crime. But if we are too fixed in our thinking it can stop us looking past a whole raft of explanations.

Bennijax
Bennijax
in reply to Tiredcat

The immense stress caring for a loved one who is very sick or dying resonates with me - I lost two very close, healthy and robust (I thought) friends who stepped up to care for elderly parents, or a close relative with cancer, and once their loved one died, they in turn were diagnosed with a terminal cancer. I cared for my mother who had cancer the last three years of her life and I was healthy when I started that journey. I got cancer in the last year when I was caring for her. I'm free of cancer but that year was a ghastly one. Emotions play a huge part in our health. The moderator explains that PMR was first described in 1888, and thinks that fact limits the impact that modern life has on causing the disease. Does anyone have actual statistics on the numbers of people being diagnosed with PMR each year in each country? When I was diagnosed was that diagnosis immediatey entered as a statistic? is there a strict protocol for doctors to give that data in to a PMR data collecting course? Are the numbers of people being diagnosed with it stable, decreasing or increasing?

Broomser
Broomser
in reply to Tiredcat

I developed GCA/PMR after about 2 years of terrible stressful events. Almost certainly brought it on for me.

lesley2015
lesley2015
in reply to Tiredcat

I can relate to this, I was happy, busy and rudely healthy at 50. I had coped (I thought) with my hubby having a major heart attack at 47, (survived but a difficult time), my father then having a heart attack (survived), my brother diagnosed terminal with cancer and passing when I was 51 and my father dying 6 weeks later...... that's when I became ill, I also changed my job and that was extremely demanding and my health deteriorated, rapidly and eventually diagnosed GCA/PMR at 55, and 5 years later still on preds and struggling with that and add-on conditions that have popped up. No previous long term meds, walked regularly, owned my own horse and no health issues at all ...... for me definitely stress culminated in me having this condition (will cause a flare if I am open to stress even now) - its a shame when that stress is removed the PMR doesn't just jogg off somewhere! (:

Im sure our bodies are all different and we each have our own triggers ...... best wishes to all.

NanJean
NanJean
in reply to Tiredcat

My aunt had GCA. She died in 1980 related to an infection. I believe that she had some psychosis from the steroids. PMR for me went un-diagnosed for 6 months until I was biopsy diagnosed with GCA. Since doctors believe that there's some genetic factor involved, joining this forum was a way for me to learn more. So, if we are genetically predisposed to autoimmune conditions, stressors accumulated over time may tip the scale.

PMRpro
PMRproModerator

The fact that PMR was first described in 1888 suggests that a lot of those theories couldn't apply since the factors you have implicated simply didn't exist then.

chicken pox was, as was wheat , gluten, flour, sugar ......

PMRpro
PMRproModerator

I didn't say ALL, I said many. Sugar played only a very minor role in the diet in Scotland in the late 1800s and actually nor did wheat, certainly not the highly commercialised stuff that is the possible cause of so many gut problems nowadays.

As a retired biologist I found your post and theories very interesting and definitely worth pursuing.

Like you, I am a PMR survivor and, like most of us, searched for the original trigger or triggers. I have, for as long as I can remember, had gut problems as have several other members of my family. I did have a virus pre PMR but don’t recall taking pain killers for any length of time. I was, however in very close proximity to chickenpox, sleeping with and cuddling my young grandson who was very poorly with it. I felt unwell afterwards but didn’t catch chickenpox, although I had had it twice before, once as a child and once when my own children had it , my late mother had it 3 times in her life which, although very rare, is possible.

I settled on the theory, that, in my case, the chickenpox virus had triggered my autoimmune system.

Broomser
Broomser
in reply to Melodyvine

Interesting, I have had GI problems, as did my father and grandfather (both had cancer). I believe it is possible for my gut health to be a factor in my GCA/PMR. I had a colonoscopy a few weeks ago and await biopsy results (no cancer but possible inflammation of the gut). I also agree with others that leaky gut may be a contractor and must be investigated as a factor in this horrible condition.

I didn't take any drugs before getting PMR. I was fine one day, and woke aching all over the next. I also developed a sore throat for 3 days, and an odd spotty rash for a month. I did go off tea, potatoes, bread and tomato-based food in the beginning. Scientists are finding out the importance of gut health, and I think it is related; in my case I feel it was extreme stress that caused my PMR, as stress usually affects my stomach.

Pmrsurvivor1
Pmrsurvivor1
in reply to Parami

Your sore throat and spotty rash sounds like a virus to me

Thank you. So far, reading everybody’s comments, a correlation to diet or gut health is coming across reasonably strongly , not by everybody but let’s say “statistically significant” for now. And we must remember we may be looking for up to three smoking guns here, one being the general health backdrop before PMR, (perhaps another medical condition or underlying weakness) another bring the initial trigger ( maybe a virus or maybe a severely stressful emotional event) and a third being the ongoing aggravating factor or factors once you have it( maybe diet related).

This is my 'gut' intuition so I'll follow that path earnestly, and hope. I'm slowly getting used to a diet that involves no gluten whatsoever, no wheat, reduction in grains, cutting away certain legumes/pulses, cutting back on carbs unless they are low-glycaemic, and most difficult - sugar in all forms. I then counter this with eating little but the best meat I can source, grass fed, tradionally reared, bone broths I am making weekly myself, with organically grown vegetables and 'good fat' such as organic, 'virgin' coconut oil, olive oil, avocado oil, ghee, organic butter sourced from grass fed cows, plus sheeps yoghurt and kefir. No cakes, no pies, no delicious buns, no bread, no gorgeous sauces. But with all this I seem to have a calmer digestive system and pain is reduced. The one thing I must do a great deal more of is exercise and walk, but I'm still tired, and can't do much. I pace myself, I'd just like to do more.

In my case it's very likely that stress and emotional stuff initially caused gut problems 35 years ago. Add in antibiotics for this and that, several root canals (the last one in 2010 went very badly after a severe abcess - and I first noticed something had 'changed' in my vigorous health within days of it). I just want to continue to calm my mind and digestive system, and become relaxed and accepting. After trying malate, citrate and oxide forms which were not helpful to me, Magnesium Glycinate is doing something very good.

But each of us is different, we have our own pecular body chemistry. In my opinion a gentle, experimental approach, and making notes about how one feels after eating this or that, may bear some fruit.

I have taken Q10 for the past 15years, long before I was diagnosed with PMR in 2018 and have to say, it made no difference with the illness. I wasn’t someone who took other medications like ibuprofen, aspirin etc, never liked

taking analgesics. I put my PMR down to high levels of stress.

I, too, have a biological background and find this discussion fascinating in a theoretical way. However I would ask, why do women get PMR/GCA four time more often than men? And almost always post menopause? Is leaky-gut syndrome in general also much more common in older women? And if so, why? Are the hormones testosterone and oestrogen protective of the gut in some way?

My own "trigger" was, I believe and my GP concurs, probably having the shingles vaccination simultaneously with an unusually stressful period in my life. I also take a Co-Q10 supplement. I can still eat wheat, the nightshades, coffee etc without additional pain or inflammation.

PMRpro
PMRproModerator
in reply to Cross-stitcher

The figures I've seen are closer to 2 to 1 but they are similar in almost all a/i disorders, far more women than men except ankylosing spondylitis (which leads to some doctors to ignore the possibility in women who I think tend to show signs of it much later in life).

However - it is probably a lot to do with those pesky x chromosomes

"Women are less susceptible to infectious diseases than men, but are more often prone to autoimmune diseases. This higher prevalence is partly attributable to the X chromosome, which has many genes relating to the immune system. ... Most autoimmune diseases are far more prevalent among women than among men"

tidsskriftet.no/en/2017/06/...

I hadn't associated AI diseases with the X chromosomes. Interesting. So women have double the risk?

PMRpro
PMRproModerator
in reply to Cross-stitcher

Depends on the disease - some there are even higher rates of women compared to men.

Yes, I’ve come across the theory elsewhere that the shingles vaccination was the trigger which links to my chickenpox theory?

I also wonder about gut lining being less ‘robust’ in females and even more so post menopause, there possibly being a hormonal or genetic link allowing alien or toxic substances to enter the bloodstream, virus or stress related.

Sorry, I'm going to be one of the people for whom your hypothesis doesn't work. I have always been a non-pill-taker and a huge avoider of 'chemical' medication. If I have had a headache (rare), or an 'upset tummy', I have tried to work out what caused it and never gone straight for a pill. HOWEVER I would not take issue with your point about the connection with the gut.

MY, totally unscientifically researched, hypothesis is that PMR, like many, many conditions, arises because of prolonged stress to our systems - which can be mental or physical stress or a combination.

My layperson's view is that over the decades, , particularly in 'developed' countries, our body's systems have been subjected to increasing levels of stress, pressure to 'perform', to conform to somebody else's image of what we should be, 24 hour news, increased intake of pharmaceuticals, increased exposure to 'man-made' chemicals, unclean air, plastic particles in our food, all sorts of 'unnatural' ingredients in processed food, and indeed in unprocessed food stuffs - the residue of chemicals used in the production of that foodstuff. And for some of us, it's all too much for our system.

When I first came to this forum, already pretty convinced that my PMR had something to do with a year that had contained more than a fair share of mental stress - I was struck by the number of people posting questions or comments, who had been in high-stress occupations, not least women who were running homes, caring for/about their own spouse, their grandchildren and their spouses and grandchildren and, in some cases, their spouses. Some were caring for people with terminal conditions, or were grieving for relatives/friends. There were people who, added to the quite considerable pressure of 'administrating' their lives and managing their property, were moving house, improving houses, etc etc. Others were people who were also driven to personal physical achievement - runners, walkers, persistent gym visitors or to maintaining a successful career.

I realise that many, many more people cope with such stress than acquire PMR, or GCA, or Parkinsons, or MS or, indeed a multitude of conditions that may be brought on by various kinds of stress. But for whatever reason, some of us have not recognised, or used, the defences we have to the stresses.

So far, (15 months), with the enormous help of this forum, I have managed my reactions much more successfully when one of my stress buttons has been pressed - but I imagine that has been made much easier by pred!!

Hildalew
Hildalew
in reply to Hildalew

And, among the stressors, I should have mentioned SUGAR.

Well! As I said in my last post, your post has stimulated much review, reflection and research among forum members. Bravo!

I was healthy and active and got the (old) shingles shot. When I then got PMR, I gave up all sugar, flour, gluten, and processed foods. I lost weight. Now at 1.25 mgs of Pred I have added back many of those foods sparingly without flares. Only excessive physical activity has brought on a flare for me, not foods. But, who knows.

Hi, I have had PMR/GCA for 5 years. I was never ill before and I never took any medication for anything. I always put mine down to a very stressful period I was going through.

Also has anyone ever considered that their blood group affects their health. I am Blood Group A which I read those with this group have a sensitive immune system. I have been taking Aleo Vera pure juice which helps the leaky gut syndrome.It appears to help and my symptoms do not appear to be as bad, my CRP is down to normal.

IslandRN
IslandRN
in reply to regan2

Blood A+

DadCue
DadCue
in reply to regan2

A- for me.

A very common O+ for me.

HeronNS
HeronNS
in reply to regan2

O-

DianeA1
DianeA1
in reply to regan2

B Positive......which I am. :)

I truly believe my PMR started after a very stressful 6 months which included my daughter’s marriage break up, a family death, my husband in hospital followed by myself ending up in hospital. I had been in perfect health up until that time. But who knows, I’ve got it and that’s that! Just need to get on with things as best we can although it is a struggle sometimes. 😀

I had no obvious stress, had taken the usual amount of OTC pain relievers from time to time, had the flu shot annually and had the shingles vaccine two years prior to PMR onset. I am half Norwegian and half German and was 75 years old at onset. I was on Fosamax for 10 years, which, because of sporadic acid reflux attacks, did much damage to my esophagus. Because of that, I was put on injected Forteo, a bone strengthening medication, for two years. That medication ended just two weeks before my symptoms began and two weeks later I was diagnosed and treated for PMR and possible GCA. I will always wonder. I am a good candidate by current standards, but some possible trigger moving it from genetic lurking to full blown is still a question for me.

Bless you for sharing yr very collected and pragmatic thoughts, and for trying to help us all with solving the PMR mystery; it makes perfect sense, and you may be proven right. thankyou....

Yes thank you - I am in the gut is the cause camp too

Chrob
Chrob
in reply to rick518

I’m in the gene camp . Vikings ect .

Songbird69
Songbird69
in reply to rick518

Me too.

DianeA1
DianeA1
in reply to rick518

I am in the gene and the old shingles shot group.

I suspect that gut problems aren't the cause of PMR, but may be part of the whole autoimmune disorder which causes PMR, and can also affect other body functions. I had a couple of episodes prior to diagnosis where it seemed my bowels turned to water. I made note of the dates as I did not have any other gastric issues, and it occurred apparently randomly several weeks apart. Then I started pred and I have never had this problem since (nor had it occurred in my life before).

After reading your post, I recall now that my doctor had me on a low dose of Celebrex (100mg daily) for at least 6 months prior to my PMR. This was prescribed for my lower back pain. I took myself off the Celebrex once I started my Pred. Perhaps this changed my gut enough? I am seeing my new rheumatologist today so will mention this concept to her (have been waiting 5 months).

As for the reactions to certain foods, I get a clear correlation with eating wheat and my PMR flaring. I have been tapering and am currently down to 4mg after 3 years on Pred. I once got to 2.5mg but a stressful situation put me back up to 5mg. Stress for me definitely brings on a flare. I will ask about the Q10 today as well.

Thankyou for your post, I always look forward to reading what others who have suffered far longer than I with PMR think and have experienced. I have been reading info and had come to the conclusion myself that I felt it was gut related and started probiotics, but have not noticed any difference. I did not have a fever or long term use of any of the drug line that you mentioned, I was very active and in good health and I've not noticed any difference when I was eating wheat or when I cut it out.

You mentioned that the PMR is gone now and although this question is difficult to answer, I hope you can take a stab at it. My own belief is that I don't want to take so much Pred that I don't feel any pain, as I want my adrenals to wake up and start performing like they should, given pred only mask the symptons and dose nothing for the cause. I monitor every day and chart my pain level and stay within having mobility, but my pain, mostly in shoulders in neck is around a 4 and I am curently on 6 mg of pred., and I can look back when I was on higher dosage and had the same chart level of 4....so I figure something else is going on and more pred is not the answer. My question is, did you take enough pred to dull all pain or what level of pain did you chose to deal with....Given you managed to go into remission, what was it like, were you pain free & then pred free and into remission........just like to know what lays ahead......thanks again for your post, always appreciated

I had a few tapers where I got down to 1mg and then had a flare and went back up to 15mg for a week 20 for a week then 5 for a month then 2.5 then 1. my rheumatologist insisted that the best practise clinical advice was that total suppression of the inflammation was critical and that to try to live with even a little bit of pain was a classic mistake and also to try to “rush” to get to zero was a false economy , I eventually surrendered myself to the process taking as long as it takes and followed his instructions to the letter. I definitely found that a no wheat coffee tea diet enabled me to get down to low doses (sub 5mg) and I just decided to live with the pred risk , I took the calcium and vit D supplement to protect bones and ran the gauntlet for circa 5 years. I got to 1mg every second day then zero. All morning stiffness gone, totally gone, just hope it stays away now.

thankyou so much, you have no idea just how valuable that info is, i don't have a rheumatologist, not one in my town and too far to drive, so going with what I have, a lovely, but very very young doctor, who has simply said, "you decide on how much pred and when to reduce"

I hope it helps you, a DR should definitely not have told you to decide yourself what dose to take, but if you have no other advice then based on what my rheumatologist drummed into me and assuming your Dr has prescribed you pred for PMR , then go with a dose high enough to remove all symptoms (usually 20-25mg will do it but obviously no higher than whatever your dr originally prescribed when you were starting) then work slowly and carefully to the lowest dose that keeps your symptoms at bay , reducing by no more than 5mg per month because it takes a while to stabilise at each new dose, and if you manage to get down to 5mg, stay there for at least 2months then go to 4 for a month, 3 for a month, 2 for a month, if you get a flare go back up at least 5mg above that dose (cutting it too fine is a false economy) and hold for a month then try to come down again slowly. If you manage to get to 1mg stay there for 3 months then go 1mg every second day for 3 months then go to zero. once you get below 3 or 4 mg the side effects of pred are pretty minimal so it’s better to take your time. Always take the vitD and calcium supplement , i was on pred for 5 years and my dexa scans showed that I only had minor loss of bone density , I put this down to diligently taking the calcium. one other thing , each time you reduce dose you may feel weird for a day or two, maybe a headache and a slight increase in discomfort , unless its terrible push on through that and give the new lower dose at least a week to settle down , it often does. Also if you find that 20-25mg is not eliminating all pain within 24/48 hours then ask your Dr to consider the possibility that it’s not PMR and is instead something else, for example rheumatoid Arthritis can take a much higher dose to suppress and a longer time , and if you have RA then you need a different kind of treatment and need to see a rheumatologist for sure. Once again I’m not a DR and only apply my comments within the boundaries of what your own DR has already approved

Re-reading the above i should say when your dose is up high around 20-25mg do try to reduce that as soon as possible, it’s a relatively high dose and not where you want to be for long, don’t hold 25 for a month, try not to hold it longer than a week or two, same for 20mg. At those levels the side effects of pred can be pretty severe, mood swings , irrational aggressiveness , excessive hunger, skin trouble , so not a good place to be. 20-25 gives the inflammation a good strong kick to get it under control and then the objective is to start tapering down as soon as possible whilst trying to strike a balance between the importance of getting down to a low dose soon and at the same time not getting ahead of yourself . I repeat I’m not a DR, what I am describing is my own experience as a patient

PMRpro
PMRproModerator
in reply to remission

But what makes you think your adrenals weren't performing as the should to cause the PMR? Don't get the role of pred as an antiinflammatory mixed up with the effect on adrenal function.

remission
remission
in reply to PMRpro

only by what my young doctor has said, which is basically, "I need my adrenals to start working again"...she explained it as my adrenals kicked out and my immune system attacked itself.

PMRpro
PMRproModerator
in reply to remission

A top name in the PMRGCA research field doesn't think poor adrenal function is a significant factor in PMR and it has been considered. Being on pred changes the game with adrenal function but that is a different matter altogether - like the central heating boiler not pushing out more heat when the woodburning stove in the room with the thermostat is roaring away.

remission
remission
in reply to PMRpro

very good way of explaining it. tks

Thank you for your effort and carefully thought out attempts to offer ideas about the cause of PMR. And for your responsible warning about your not being a doctor or with any special medical knowledge . Your article has bought up so many valuable responses from those who have so much experience of PMR and how to manage it. Would like to mention that I am in a flare right now a miserable one after SIX years on 5m of pred. One in Oct less painful but difficult 5m to 7m and slowly back down one mg 3 wks apart, backto 5m. and now this. My rheum. raises pred only 2 mg. very conservative and it does not get me over the flare only makes it more bearable but I am concerned that the under medication , and slowness to treat the flare will be harmful over the long run. I refer to the comments in one response to treating below the amount of pred that removes pain not just helping to be some better. My Rheum send me to physical therapy for my shoulder and remains very concerned with keeping Pred low rather than prescribing enough to put me above the pain and stiffness We go round and round on this . Add to this that I am one of those 30 %or so who do not register much of a rise on the sedimentation rate in my blood work. It is so discouraging to be in a level 5 pain and get a report in my email from my Rheum that good news you inflammation is low!!! This while I am struggling to hobble to the kitchen to make a bit of breakfast , low carb or lift my arm to a cup from the cupboard shelf . My Rheum is not an uncompassionate doctor, not at all; but does not see at 81 I prefer to risk some pred side affects and live without stiffness and pain everyday on awaking that only gets better late in the day. Not enough Pred?? So long I know so thanks. I am in quite a bit of pain to type this and some brain fog, so it is long, not very concise. Bless you all who help so much. And know how it feels when you have managed to shower, comb your hair ever so slowly, gotten dressed in a bright color to help the mood, and go to do a short errand, no more to tired. and someone says Well you don't look sick at all!

I think everything I have said comes with some context which is my age which is 49. I think at 81 your Rheum is almost certainly more concerned about pred side effects at higher doses and may have prioritised getting the dose down more than prioritising pain reduction, and the Rheum may have good reasons for this which might include your other health issues or meds if any. So please don’t do anything different based on my comments because what’s right for me may be very wrong for you. However..... I would say go to another Rheum and ask him/her to review your situation with all the facts. Sometimes we are too deferential to our Doctors , my uncle is a Dr and he always says half his Dr friends are often wrong! As the old saying goes “doctors differ and patients die”.

I also think a DR needs to realise that a higher initial dose sufficient to get the PMR under control followed by correct tapering down to zero over perhaps 1 or 2 years (but always staying slightly above the pain) will ultimately probably lead to a lower overall lifetime dose of pred than the alternative regime which see you on an insufficient dose for years and years and years and never ever getting off it.

PMRpro
PMRproModerator
in reply to Pmrsurvivor1

Pred doesn't have any effect (as far as is known) on the actual underlying cause of the inflammation - it just manages the inflammation. So there is nothing to "get under control".

Pmrsurvivor1
Pmrsurvivor1
in reply to PMRpro

I meant get the inflammation under control

I'm 80 so I know where you are coming from. I feel, at our age, we have the right to judge our own bodies. If more pred makes for a better life - go for it! If rheumy doesn't agree change him/her. I find my own doctor will allow me to "get on with it" at my own rate. Good luck! 🍀🍀🍀

Thank you for sharing.I had an incredibly stressful 2 years before pmr.

Then 3 months continually before pmr diagnosis I was taking co codamol maximum dose for tooth pain/rct along with hip pain.

I didnt really take medication for anything before that.I wasnt eating healthy food and lost 2 stone in the 2years before pmr.

I've read Michael Mosley's Clever Guts diet and Amy Myers 'The autoimune solution' and loads of books on the Autoimmune Protocol (AIP). The basis of all of them is that the answer to good health lies in the gut and eating the right foods. There certainly seems to be plenty of anecdotal evidence. But sorting it out is easier said than done!

This whole thread is really interesting to read!

Hi,

I’m very interested in your theory and am 2 weeks into taking Symprove, it’s not cheap but I thought I would give it ago and like you I’m feeling the gut could play some part of it.

I’ve had PMR for 16 months and I’m 56.

Can’t remember having a virus before but I had had a lot of stress, both home and work before which I was dealing with alone.

I had Glandular Fever when I was 18 and over the years lots of episodes of brain fog extreme tiredness and digestive problems that always went away when I cut out yeast and wheat based foods.

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