I believe mine was caused by chronic stress.
Wondering what you think cause your GCA - PMRGCAuk
Wondering what you think cause your GCA
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gca5
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DorsetLadyPMRGCAuk volunteer
Well known fact - stress does it every time! For most people, stress - in any form - was an integral part of their life before PMR or GCA arrived.
Certainly was in mine.
Para taken from a previous post -
Many of us are never sure what caused the underlying conditions of GCA/PMR (physical and/or mental stress are favourites though), along with hereditary factors - for a light-hearted look see post Are we all Vikings - see Note 1.
Full link -
healthunlocked.com/pmrgcauk...
Thank you for some conformation!
PMRproAmbassador
There is no single cause of either PMR or GCA - it is thought to be the culmination of a lifetime of insults to the immune system and eventually something is the final straw that breaks the camel's back and the immune system goes haywire, becoming unable to recognises body as self so it doesn't attack it. The immune response turns on various tissues and causes inflammation that damages rather than contributes to healing.
That final straw can be any of the stresses - illness, infection, trauma, surgery, excessive physical stress, emotional stress, environmental or chemical stress. But some of them you may not perceive as stress - but they have an effect on your body.
Some people insist it was the flu jab that caused their PMR/GCA but many of us had never had a flu jab. The same applies for any individual factor. But whatever triggers the onset of PMR/GCA, stress at a later point will almost always lead to a flare ...
medlineplus.gov/ency/articl...
autoimmune; got a bone to pick with that. In terms of evolution, what would be the point of having a system of the body that attacks itself. My opinion is that doctors blame the immune system because they don't know (or don't want to know the true cause). My opinion is that there was an external source, for instance, stress.
Yes - but what is the mechanism that it influences to cause the inflammation.
You are quite right, there is a problem with having a system that turns on itself and that is why I described it as deranged - THAT is why it is called "autoimmune" and there are plenty of immunologists who would confirm the effect. Of course - if you think you know more than the scientists ...
".... because they don't know (or don't want to know..." The many doctors who have spent a great deal of their lives in research for our benefit would be justified in taking exception to that.
I would agree but I genuinely think we should change the perception of this disease. I truly believe it is life threatening and should be upped on the alarm scale for medics. Untreated and undiagnosed it would end it for you. It's getting out of the downward spiral of physical immobility, constant pain in head and body, inability to think straight, depressed state, lost desire to attempt to do anything. I had GCA although not initially diagnosed and PMR for months. Without a way out I wouldn't have lasted much longer the state I was in. The last 2 weeks were awful and the last 2 days before diagnosis were pitiful. If I hadn't been super fit and active before, with a positive can do approach to life, eating the right food and physically strong as well as being stubborn individual who has never given in to anything that challenged him I may not have got through this. I've never known anything like this disease for completely taking control over my life.
PMR/GCA is life-limiting and only becomes a serious problem if left untreated. With the correct treatment patients should be regaining, as you put it, control over their lives. As you know, that control is achieved to a large extent with Prednisolone to manage the inflammation in the body and also personal responsibility including, but not limited to, adhering to a healthy anti-inflammatory diet and no excesses in terms of exercise, etc.I haven't taken a close look at your history but you should be regaining some control of your life with recognition of the fact that you may never attain previous levels of fitness. This is not to say that you will be unable to enjoy life but that there may well be limitations and possibly relapse/s if you try too hard to achieve previous goals.
If I may say so, you seem angry and many of us may have experienced the same emotions. The feeling of 'why has this happened to me?...it isn't fair', will be experienced by many who, like you, have previously led full and active lives.
Hi 123-go. I'm only angry at insensitive or especially stupid and arrogant medics who think they know best and have the audacity to talk down to anyone truly in trouble, as most here are or were with this disease. I'm well into coping and adjusting to it now, much down to the good people here, but I have not given up hope of returning to my past endeavors. If that proves so I will adjust again to the possible not the unobtainable. I'm now in my 6th week of positive improvement but still losing muscle and stamina so a tad frustrated to say the least. My profile tells you the story and why I feel this way. I have never expected anything from this life to be fair as I have known since infancy that if I want anything fair to happen I have to make it that way. Life is competitive and often a struggle. We only truly experience the highest when we have fully experienced the lowest ebbs. It's natural and inevitable. Getting through either is the challenge because the euphoria of the heights can be addictive and destructive just as the depths are sapping and depressive. Trying to navigate somewhere between is safest but I can't do that. It's not in my nature.
Pleased to hear that you are coping and making adjustments, cycli. The dilemma that we face is whether to battle on regardless of the damage we may be inflicting on our bodies which is counter-productive or accepting what we have and limiting the damage as best as we can. There has, as you have recognised, to be a compromise between the possible and the unattainable. From a personal point of view, achieving the compromise with my own disease means choosing the safest path to avoid inflicting further damage and ideally to reach the remission stage which we all hope for. For me, this safe path improves the quality of my life both physically and mentally. I regard this as enabling as opposed to giving in. We all have our individual ways of dealing with things; I wish you well in your own choice.
There probably is an external force in most cases, even if that cause is indirect. As we age, or as we are battered by chemicals and stresses, our systems wear out and can malfunction. Whenever people on this forum are asked what they think was the cause (or final straw) which triggered PMR or GCA the most frequent answer is stress, sometimes physical (an injury or illness) and I think more often emotional or psychological. That's not scientific, merely observational. But these are external forces acting upon the body's functions. I think the mere fact that a disease like PMR/GCA is almost (not quite) exclusively suffered by the elderly shows the results of a lifetime of dealing with external forces. As for other autoimmune disease which occurs in younger people, again, there is nearly always some external reason, or a genetic error. We are not programmed by evolution to turn on ourselves but there it is, eventually most of us do to some extent. Or, on second thoughts, maybe we are - so that we die and make way for younger humans.
squid ink. I notice that most or all of the reasons the adrenals turn against the body are external. And when systems "wear out", they don't do things they shouldn't, do. They just don't work anymore.
I found your reply very interesting and informative. I particularly found your last sentence applicable in my own case. I have had a flair at a very similar time in the last three years. Do you think it is better in these circumstances to stay on a low dose all the time or try to get off the predisolone each time and then be caught out.
By "at a very similar time" do you mean there was a particular time of year/event or at a similar dose? You aren't reducing relentlessly to zero, you are looking for the lowest effective dose. If you flare in similar conditions, and that includes the dose, then look at the whole picture. If it is always a similar dose, then that is your body telling you that you have arrived at the dose you are looking for, Personally I think remaining at a low dose is preferable - and Prof Dasgupta told us last year that he often keeps patients at 2-3mg longterm as it reduces the risk of relapses. I assume that is because like most doctors he meets patients who have ignored the relapse and he starts them at 15mg again - whereas if you act quickly, if you had been fine below 5mg for a long time, a week of a higher dose is probably enough and then go to 5mg quickly and taper from there.
It is now eight and a half years since I was diagnosed with GCA. After two and a half years I came off predisolone. That lasted until December 2018 and repeated itself in December 2019 and the same in 2020. This time at the insistance of my family I have remained on 3mg per day which was the dose recommended by my Rheumatologist, who left it to me which path I should take. The previous two years I worked myself off and had several months taking nothing only to get another flare. I do wonder if I should try for 2mg or leave well alone? Thank you for your advice.
How strange - never come across that before. Who is your rheumy?
Dr Sarah Woodham. Why do you ask? The first time it happened I was accused of trying to queue jump by her secretary when I was desperate for help from someone with knowledge considering it is a relatively rare condition and it had taken nine days in hospital before it was diagnosed originally when I was given 60mg of predisolone late on the Saturday night.
I like to know about rheumies who think outside the box and are willing to accept, even encourage, long term use of low dose pred as a prophylactic. Wonder if she does do private work - "awaiting verification" on BUPA, supposedly on the Spire site but the list is too long 
Eighteen months ago when I saw her she did suggest it then but I did not take her up on it. This time remembering what she said I decided to do it. This time I shall be very interested to see what happens.
Dasgupta seems to do it at times - though he may have gone off the idea, his opinion can vary a bit
I found her on Hillingdon Hospital/Mount Vernon Hospital list but no private as yet
Having successfully attained zero pred after the world's most excruciatingly slow taper, only to relapse within a month, I tend to agree with those who say you should stay at the low dose which ensures your symptoms are controlled. If I'd known last spring what I know now, I'd probably happily be staying at 1 mg, rather than trying to taper yet again from a higher dose (currently trying 5 mg).
I'm currently on 3mg and it seems to be working OK. Did wonder if I should try for 2mg.
You can but try! Do you use one of the slow tapers? I always tapered by half a mg when I got below 10 and used the dead slow nearly stop plan.
I certainly do and like you have gone down by half a mg at a time but then I seem OK for a while before it returns. I have a disabled OH though and a lot of stress.
I'm so sorry, that does make it harder. Bear in mind that at the low doses I think we are a bit vulnerable just because of the whole adrenal function thing and the possibility our bodies don't respond adequately to stress because we are never really able to give the adrenals a chance to really get back to normal. I am sure the ongoing stress of your situation is a major factor. (Have been thinking about this a bit lately as I managed well, PMR wise, through much of the first year of the pandemic, but have been falling apart in recent months, I wonder if stress building up is playing a part? It begins to look as though it will never end and somehow this is harder for me than the initial not knowing what to expect which in some ways was an adventure, although an unwanted one of course. I hate open-ended suspense.)
Prunus, why worry about 3mg per day if you feel better for it? I have PMR and inflammatory arthritis and will be on Pred for the rest of my life. It worried me for a time but QOL is far more important than having pain/discomfort indefinitely.
That is what my OH says. He and I were brought up by parents with different attitudes to pills. It rubs off.
There may not be a single cause for GCA or PMR, but what is the harm in saying that, yes, chronic high-level stress is probably one cause rather than saying we (the medical "community") don't know what causes it?
Because there are loads of different causes/triggers at the end. What is wrong is to suggest there is any one thing you could blame. My rheumy friends here all acknowledge that stress makes PMR worse whereas a lot of English-speaking world ones poo-poo the idea. Stress suppresses the immune system, that is well known so it does contribute,
I said A cause; that's all. NOT the only cause.
gca5 i am a direct sufferer. you posed a hypothetical question that NO one person or specialisation can answer. PMRpro answered your question 14 hrs ago. Why do you prefer to engage argumentatively with PMRpro who has told you there is NO one cause. No one knows now. We can speculate, guess, draw deductions from our symptoms and the body's reaction to them. I am struggling with a 3 month old diagnosis of something I have been trying to cope with for some years without knowing what it was. Even the so called specialists took 9 months to work out what I might have. Please engage with the discussion which by the way I find interesting. I am trying to understand why I have it but more importantly I need to know how to cope with what I have however it was caused.
As many of us replied to original question, we consider stress to be one of the causes. But proving it may be difficult, and as stated, there are many causes- and scientists like proven answers before they will/can commit- which is why they say -(John Hopkins vasculitus centre)
What Causes Giant Cell Arteritis?
We do not know. We do know that aging has something to do with the disease. And we know that the body’s immune system attacks and inflames the arteries. But we do not know why the immune system attack occurs when and where it does.
Another quote (which you probably don’t want either) -
In addition, GCA more commonly appears in people of white Northern European ancestry because this group is more likely to have a particular variant in the genetics that determine how the immune system works.
Personally I was more concerned with why it took so long to diagnose, and when it finally was, how to adjust to mono-sightedness and deal with Pred side effects.
After a few months, I decided that worrying why was counterproductive and concentrated on getting on with life…which I’ve done. You may be better served to do the same.
As for your secondary question - why won’t doctors say it’s down to stress- then you are addressing the wrong audience - we aren’t doctors- you need to ask the authors of the many papers/studies into GCA.
Look at any medical paper and you’ll find a list of authors - easy to find their particulars online - and ask them.
I totally agree with concentrating on living the best life possible. This will vary considerably between individuals and their own limitations and I'm truly sorry for those whose journeys have been much less than smooth. If we can find ways to lighten the load by taking enjoyment from the small things, this, at least, is good for the soul and in many ways is healing for the mind.
Very true….always been an optimist😊…doesn’t always work, but mostly….
Mostly is better than never. 💁💕
Yep…I’ll take it 😊
To find a cause you must be able to define the problem. That is the key as I see it. PMR and GCA are defined by their symptoms which seem to mimic those which are seen in many other conditions. If there was a causal marker that could be identified in the blood, urine, feces, genes, whatever then the medics could point to that and say what you had. They still don't know what it is , only what it does. Define for me , electricity, fire, water, air. We know what they do, we can use them and manipulate them but I think science is still baffled by what they ARE. That's the exciting thing about being alive with an enquiring mind. The need to know WHY something is and WHAT it is. When you have that you can get on to how and what to do about or with it.
Medics have long said that cause of PMR is unknown. They can only go by what sufferers have described, i.e., stress, trauma, accident, injury, a virus.... It is good to have an enquiring mind: to know about your disease, it's limitations and effects but personally I will leave it to the scientists to discover an exact cause. My job is to maintain as much positivity as possible through being armed with practical knowledge of my disease and without leading my brain into overdrive.Good luck with your research. I hope you find the answers you're looking for.
DorsetLadyPMRGCAuk volunteer
“squid ink”.…??
squid ink is a defense mechanism that helps squid escape their predators by obscuring their view.
Know what it is - don’t get the relevance in your reply - obviously got lost in translation.
In any event, I would like to hear from regular sufferers of GCA.
Just catching up on posts. I am a recent GCA sufferer. Still on 40mg. I was interested in the earlier discussion on causes. I must say that the disagreement you have with PMRpro was giving me stress.....I think that all the functions of our various organs is chemically controlled by signals from the brain and genetic coding. Physical injuries like concussion, or mental pressure from unrelieved worries can affect the way we react and unbalance the way our brain directs its messaging. The resultant effect on organs is that of feeling like they are breaking down and not working as they should. I noticed it with the way my bowel function changed dramatically and what was once a clockwork regular function almost completely failed to function properly or regularly. I could feel all my internal functions, muscles, bowel, head (thinking) failing and it was as if my body had turned on itself. This chemical unbalancing as I see it causes a switch to fire and misdirects our defense mechanism to start attacking healthy organs. It goes insane. Prednisolone puts a brake on this insanity for long enough to get some semblance of balance back. I am thinking that it all depends on how quickly the diagnosis takes will finally determine how successful we are in getting off pred. Those that have struggled with PMR and GCA symptoms and been trying to cope with one symptom after another by various alternative therapies will have a long hard struggle to come off because their systems are thoroughly affected by the disease and may never be truly free of its effects. I am realising that some of the symptoms associated with this that I thought were caused by other factors I have been fighting for nearly 10 years. I have had unrelenting stress from a very difficult financial situation over 9 years and still ongoing (suffice to say we still stand to lose everything we have worked for over 40 years if unresolved). That form of stress is sufficient to unbalance any mechanism of control in the brain.
If I wanted a pro view, I'd do a google search. Not what I want.
I'm not quite sure what it is you are expecting to hear? Stress clearly is a big factor but it has to go with other events for your body to finally say I've had it and 'turn on itselfLike anything in life, it builds up and can only take so much.
But it has to include the full picture.
Big time stress for me, probably the worst stress of my life brot on my GCA.
Same as Snerd. Eighteen months of relentless, intense stress in response to an accident my husband incurred that required brain surgery and a long recovery period. I’ve always managed to deal with stress pretty well, but this was above and beyond..,
Hi, I’m convinced mine started when I got ocular shingles 3 times.
That’s stressful in itself, so maybe it is stress, but I was not under any stress when I first got shingles, in fact we were spending a lovely few days away in a beautiful hotel in Bournemouth.
Xx
Stress! two years to sell our family home of 37 years while packing/disposing of a whole life, books, 'brown' furniture beloved by us but unsellable, children's toys and memories then trying to find a down-sized home in the South of England moving from the North, then 8 months of re-building the new house living in it with no kitchen, washing up in the bath, microwaved meals, dust, chaos. Don't blame my body - enough is enough.
Age, environmental factors, heredity and of course stress. Have them all. Oops forgot I am also Norwegian.
Loving the oops!
My wife had a cataract operation ,after that headache , eye ,ear pressure started , finally after 4 month it was diagnose Gca , i still confused , is it catract operation side effect , or coincidence , has any one have catract operation base Gca ?
Not usually before GCA, although some do require one after being on the medication, as steroid induced cataracts can be a side effect.
I would say in your wife’s case it was a coincidence- the disease was probably already building up, and the cataract operation was the catalyst that made GCA surface.
Hi, my problems started about 19 months ago..I gave up running my own business just before the pandemic to look after my 100yr old mother in law. She lived alone & was totally independent..did her own cooking cleaning baking for us and neighbours caught the bus into town alone, walked dogs, did crosswords, won prizes for her gardening..perfect m-i-l. She fell and broke her arm in 3 places. Her hospital treatment & recuperation were so horrendous, it took us 6 weeks to get her home, by which time she had not been allowed to walk anywhere & it was as if she had forgotten how to live. My husband moved in with her for 6 months...her carers were useless so it was left to us 24/7. We finally got rid of the carers and brought her to live with us for the last 6 months of her life. By now she had developed dementia and was awake all day & night. We couldn't get any help & were totally exhausted for over a year. When she died in May 2020 we had to empty her rented bungalow and sort out all her paperwork. When everything was finished my husband had his first bout of rheumatoid arthritis..still suffering badly..5 months later I started with what I thought was arthritis but was diagnosed as PMR in Feb. this year......plus the pandemic..all ties in with extreme stress.My sister ( 10 hrs younger) has just been diagnosed with rare terminal cancer...more stress..now having flare with some GCA signs...more stress....never ending circle
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