Talking to NYC Rheumatologist today

[3daysinjuly]

I went to see a 75 year old top doctor today whose office is in Mahhattan. He gave me almost an hour so we talked a lot. My last question to him was what do you believe caused this PMR. He simply answered....”stress.”

[markbenjamin57]

Greetings from the UK 3days...

Thank you for a very succinct but relevant Post about your experience (of PMR / GCA, I assume ?) and - in my opinion - your wise NYC Doctor's conclusion as to the possible cause. An Hour in discussion with your Family Doctor? Wow, many of us in the UK would be very envious!

Many (but not all) of Us Lot on this forum anecdotally report having experienced subjectively 'Stressful' events and experiences prior to the onset of PMR and / or GCA - amongst other things. And, perhaps, some of us also have a genetic pre-disposition and / or inherent Personality Type which amplifies the Stress / AI response in terms of a possible Auto Immune over-reaction - despite our physical context?

As for how Physical and / or Psychological / Emotional 'Stress' is defined and processed in an Individual's context? Well, this seems to be the 64,000 Dollar question in determining and making sense of the myriad of possible causes of our types of illness. And, not forgetting any combination of Genetic orientation (e.g. more prevelant in Northern Europeans), Family history, and the Ageing process itself: in which, from what I understand, the Auto Immune system gradually weakens - like everything else - ha ha!

On a serious note: it seems that many (but not all) PMR / GCA Patients are aged 50+. So, although I tend to agree with your lovely Doctor, the PMR / GCA Cause Equation is still far from proven Evidentially. The Plot thickens.. ?

Either way, I'm sure you'll receive a healthy response to your Post, and I look forward to following it. Good luck!

Best wishes and smiles

'Uncle' MB

[3daysinjuly in reply to markbenjamin57]

Thanks. Of course, he also admitted to so many things which can’t be known. He told me that in the early 70’s he and his Rheumatologist colleagues used to consider PMR a 4 month disease and consider their work done after such time and treatment. They, of course, know differently now, but that was candid, you know?

[markbenjamin57 in reply to 3daysinjuly]

He sounds like an open-minded, insightful and thoughtful Doctor - look after him!

[Mks9558 in reply to 3daysinjuly]

Wow, we’ve come a long way! And I agree - stress is the ultimate cause...work, family, political or all of the above....

[bunnymom in reply to 3daysinjuly]

Very.

[SheffieldJane]

It certainly led to mine. How lovely, a whole hour.

[3daysinjuly in reply to SheffieldJane]

Well, I think the appointment behind mine didn’t show up. Lol. Pretty nasty weather here this morning.

[SheffieldJane in reply to 3daysinjuly]

We had sparkling sunshine - in Yorkshire - in November!

[Constance13]

What I’d like to know was it MY stress (can’t really say I have ever suffered greatly with it), my mother’s stress - because I am sure she had it, the stress of just living, or what? Like OA, RA, and many many other illnesses could it also be hereditary?

[Suet3942 in reply to Constance13]

It hit me after a very stressful family situation. However, my mother had it (pmr and gca), after my father passed away and I’m sure that her sister had undiagnosed pmr. Their mother, my grandmother was bedridden with a mystery illness. In great pain, poor woman!

I was told by a rheumatologist that he was treating a mother and her 3 daughters,all diagnosed with pmr.

So a bit of a mixture, wouldn’t you agree?

[Bamber99 in reply to Constance13]

I don’t believe it was stress for me. More likely previous ailments: chest infection, pneumonia pleurisy etc

[Longtimer]

How wonderful, did he give any clue as to why some people recover quicker than others??

Good luck and thank you...

[3daysinjuly in reply to Longtimer]

I wish I had asked that. But, honestly, it was a nice chat, however even for my own case I can’t really say I will proceed differently from what I was doing before this visit. He told me to stay on 15mg and i can go very slowly down depending on the blood work, check in with my ophthalmologist periodically while on Prednisone. You know, the usual. He did mention that they have and use the steroid sparing drug.

[Longtimer in reply to 3daysinjuly]

Ok, thanks for that......

[Primarose]

I fully agree with your doctor, have a look at this post, so many of the kind members in here replied and it speaks for itself in my book:-

healthunlocked.com/pmrgcauk....

[PMRpro Ambassador]

Ah yes - but which particular form of stress? It covers pretty much everything!

[katiemills in reply to PMRpro]

Hello I've just posted a comment on this feed about genes and stress and would really appreciate your opinion about what I've said .

[moskin]

Without a doubt stress was the cause,a drug addict son with many problems,taking his own life 3 yrs ago,and my job as a nurse,I am not quite sure how I survived it all.Have had PMR over 4 yrs now,have tried x2 to get off steroids but to no avail.

On 7 mgms at the moment.

I just hope it eventually goes

[Twopies]

I don't believe that for one single minute. So many illnesses that were once thought to be stress induced have now been found to be caused by a virus, bacteria, gene, etc. and I don't know one single person who isn't stressed, so for me, it's a garbage pail theory. For example, ulcers used to be caused by "stress." Now 90% are caused by a bacteria. So I have to politely agree to disagree.

[markbenjamin57 in reply to Twopies]

Greetings Twopies.

Well, at least you take a stand on this - even if a controversial one!

To add some context: 'Stress' (psychological and / or emotional) is typically defined by psychologists as 'the perceptual gap between an individual's reaction to external 'threat' (loss of control over a situation) in relation to our perceived resources (or lack of) to cope with, change or survive it'. Certainly, the Stress experience is very personal and subjective, and will vary from one individual to another - again, in context.

As you rightly say, Life itself invariably presents us Humans with stressful / challenging situations and experiences: from crossing a busy road to coping with a major Life Change. The thorny question of Causation vs. Correlation comes to mind here: i.e. can some Illnesses (e.g. PMR / GCA) be directly attributed to Stress - or is Stress just one of many components in the mix? And, yes, I'm sure some illnesses and ailments can be falsely attributed to Stress.

However..

Many people here seem to report at least a Correlation / linkage between a Stressful experience or period in their Life and the onset of their PMR / GCA - even if there is no medically provable, direct Causation. Either way, I think most Medics and Clinical Psychologists would agree that dis-proportionately high and / or sustained levels of psychological / emotional Stress can in fact have significant, adverse physiological effects on even an otherwise healthy Immune System.

It's a complex topic, I know. But this, too, was my experience prior to the onset of PMR. So, I'm sorry to disagree with your comment that the Stress / Illness link theory is (q.) 'garbage..' etc. It's a very real experience for many intelligent and well-read people with our types of AI-related health conditions. Just ask them....?

On a final (more important?) note..

Although you acknowledge that it's good to 'politely agree to disagree' (thank you - that's important here): at the same time, your HU profile gives absolutely no information about you personally or your health context / circumstances (even if anonymously). Nor does it state whether you are indeed a PMR / GCA Patient (or not?).

The vast majority of contributors to this community forum are generally fairly open about, and sharing of their backgrounds, health circumstances and personal PMR / GCA Journey in order to share experiences and views with others.

All I would say is: this contextual information can help a lot when these differences of opinion occur - and I'm sure it will help others on this important thread to engage with you if they know more about you. But that, of course, is up to you...

I hope this reply is fair, balanced and constructive all round, and I'm sure all responses will be welcomed.

MB

[ptm2018]

I used to live in NY too and first saw a rheumatologist at HSS the day after I had bilateral total knee replacement surgery. They thought I might have RA because the tissue in my knees was bad. I did not have RA. Lots of stress. Then I recovered after undergoing rehab - in hospital and out of hospital. Then we sold our home and moved to Florida. Lots of stress. Then hubby had quad bypass surgery in Florida-lots more stress and I run a full time medical public relations company - more stress. But it’s not “just” stress that brings this on. I have done a ton of research on this subject. First it can be genetic (my cousin has this and I suspect my aunt who is dead did too). In addition foods high in glutens and sugar and fats can cause including eating non organic and processed foods. Also “lack” of activity - too sedentary can cause it. Allergies can cause it. Yep that’s right. And my allergist uncovered I cannot eat shellfish which I love and my gluten tests were off the charts. Any and all of the above can bring this nightmare on. So now I have no glutens, no sugar, no shellfish, try to exercise more (swimming) helps. And one more thing I have learned: the ESR and CRP blood work can go up and down like a yo yo too. That’s happened to me too and without any symptoms of pain! It could be a sign that some of us simply have elevated ESR levels. So my rheumatologist who is one of the best here in Florida and I mean outstanding, never rushes me out has confirmed everything I have written above. Try to eat as clean as you can and get plenty of fresh air and drink Smart water. BTW this PMR can go away after a period of time and then come back. The above outlined preventatives can help. Keep yourself active. 😎

[Reader7]

I can't think of any particular stress I had when my symptoms began...I'm happily retired with a satisfying life. But I am a 71-year-old female of Northern European heritage with a family history of autoimmune conditions...hypothyroidism, vitiligo, psoriasis, alopecia, and now PMR.

[gaqke10 in reply to Reader7]

Me too. Only I had a lot of stress as well, in January of this year, when we retired, sold

our house and moved. In March my symptoms began. I already had had Graves' disease and Hashimoto's for years.

[Artsister]

When my PMR started two years ago, I couldn't remember anything particularly stressful happening in my life at that time. But I have a friend who started having auto immune problems when his wife was diagnosed with Alzheimer's disease and summed up his stress in his life being like a pitcher -- the stress is like water pouring into the pitcher, and when it is almost full and some small stress is happening in your life the pitcher overflows! My pitcher was probably getting full when my husband left me with two small children and I was pregnant because he was in love with one of his students. That probably made it over half full! Then a life of raising 3 children by myself, working, a small salary etc. I'm sure it kept filling up. And even though 28 years went by before my PMR started, it could have been a smaller stress that made it overflow. I thought "the pitcher theory" was a good analysis. Take care everyone!

[katiemills]

My PMR has only been diagnosed a month ago , so I have a steep learning curve ahead .... I think there must definitely be some sort of genetic factor in my case .... my sister had PMR 15 years ago , my son was diagnosed with Ankylosing Spondylitis aged 22 ( he's now 32 ) my nephew was diagnosed with Ehlers- Danlos syndrome , aged 24 ( he's now 32 ) and on reflection I remember a great uncle who was totally bent over - obviously ankylosing spondylitis. I had a spinal fusion in 1976 - four large screws ( that are still floating around inside being useless) and bone grafts - aged 24 for "prolapsed discs" and have had back pain all my life . Then in 2014 I slipped and fractured another couple of vertebrae and needed a vertebraplasty to fix them and then in 2016 I slipped and tore the medial ligament and cartilage in my left knee and was on crutches for weeks . ( the surgeon didn't want to do a repair because he thinks I'll need a new knee In a few years ). So I'm my case I think it's a bit of everything - genes and stress !!

[PMRpro Ambassador in reply to katiemills]

PMR/GCA aren't genetic diseases in the way cystic fibrosis or muscular dystrophy are - but having a particular selection out of the gene pool is said to give you a predisposition that, when combined with a load of other stressors, may send the immune system into a tailspin. AS is one that is genetically determined to some extent - the HLA B27 gene is frequently found BUT not always despite imaging confirmation:

ard.bmj.com/content/71/Supp...

Stress of all sorts puts strain on the immune system - but so do environmental and infectious challenges. It isn't ever simple and to say it is "stress" is being simplistic. But one certain fact is that if you have one autoimmune disorder - others like to come and join in the party!

I think of a/i disease as a shop with a long counter and loads of shelves with boxes of symptoms behind it. We queue up and the assistant just chucks a selection of symptoms at us - with maybe one falling on the floor and being thrown over just as we leave out the door with our hands full. The symptoms that have the sharpest elbows dominate - and then we are labelled with the existing historical job description, usually someone's name who first noticed they had a few patients much the same in presentation, wrote a paper and added their name for posterity. In recent years the technology has improved so other things can be identified - pathology, biochemistry, images. And now diseases that used to be thought to be different get lumped together, like PMR and GCA, or that were thought to be similar are found not to be after all. Everything changes...

Thinking of the link I just gave you - I assume that all these back things are nothing to do with AS lurking in the wings?

[markbenjamin57 in reply to PMRpro]

Well put PMRpro re. the probable conspiracy of any or all of: genetic pre-disposition, geographical / familial origins, gender, age, Personality Type, and aggravating psychological / or stressors.

I'm certain that you've hit the nail on the head re. narrowing-down the possible causes of, and contributory factors involved with PMR / GCA and similar AI illnesses. Thank you as always.

MB

[katiemills in reply to PMRpro]

Hi again, thank you very much for replying . I'm not sure about AS lurking in the wings - sounds very possible though , doesn't it ? The link was interesting reading .

When I went to my GP aged 22 with chronic back pain ( 1974) I was sent to an orthopaedic surgeon , not a rheumatologist. I can't remember what they tested me for at the time , but in the end they said surgery was my best option . I suppose it did help a bit but I have been plagued with back pain all my life . I've been very fortunate in that my husband has been able to support me so I was able to stop working when I was very young.

When my son was diagnosed with AS I asked my then GP to test me for the HCA-B27 gene and it came back negative . However , now I've started my PMR journey I shall be going to my new GP next week with a long list of "I wants" , including getting referred to a rheumatologist . Many thanks for all your help .

[PMRpro Ambassador in reply to katiemills]

At least if you don't have the gene it makes it maybe less likely - although you can have spondyloarthropathy without it. But it would be interesting to know if there IS anything like that causing the back pain - things have changed a bit since 1974!