PMR, Prednisone, Addisons disease

Ooops - meant to add this:

https://patient.info/health/addisons-disease-leaflet

that was very informative.

i was wondering if there has been any collation of information with regard to how we develop PMR in the first place. With me it was an overnight thing......No sign of anything wrong until that first morning.....

surely here must put be a pattern?

What a detailed response Eileen - very helpful indeed for many of us. It was good to see you point out how the notion of 'adrenal insufficiency' has been used to exploit many people. When I first got my diagnosis of PMR I asked my GP about this in particular as it always seemed a very 'flaky' idea and he also stated it is essentially a load of rubbish but some 'natural health' proponents have a knack of making it sound fairly 'rational'.

Thanks again

Best wishes

Thank you, Eileen, very thorough and informative response, as usual.

PMR can last so long that you keep wondering if it could be something else. When the dose of prednisone is working and you feel well you want to "throw your crutches away", only to be crippled again. It is so complex, this PMR. Appreciate your knowledge and your ability to share it when you are also a sufferer😊

Always good to read about other illnesses.

Thank you.

Not really that I know of. For some of us it creeps up - for others they wake up with it full blown. Except many patients who thought they were the second group look back and see little signs something was happening long before. Really when you look even at the members of a forum, a relatively small and select group (you have to be computer literate and "in" to using this sort of thing) you see that there is a massively wide spectrum of presentations and disease courses - which makes it hardly surprising doctors find it difficult to deal with! The textbooks are terribly generalised - and miss out many of the really key things as far as patients are concerned. That is obvious from this paper:

https://patient.info/forums/discuss/i-suddenly-felt-i-d-aged-a-paper-describing-the-effects-of-pmr-542889

where even the experienced doctors who did the study were surprised at patient's comments about disability etc.

It isn't even sure exactly what it is - that it is related to GCA seems obvious but whether it is the same mechanism isn't known. There seemed to be some evidence that the tiny arteries that supply the blood vessel walls may be implicated in GCA - and that could provide a link. Personally I suspect far more of us actually have GCA affecting larger arteries than they think - but they don't do PET-CT on enough of us pre-pred to know (because it is very expensive and the waiting lists are long unless you have a potential dx of cancer).

An awful lot 

How can how can Eileen be so articulate while on prednisone?!😊

To be honest Kathy - it isn't a side effect I've ever noticed! I DID suffer brain fog, irritability, short temper (it never had been particularly long    with PMR though - and after a few months on pred it had all improved a lot. 

Using language has been my trade for 30-odd years as a translator, when that job ended I took up the forum. Perhaps I really did the wrong things at school and Uni - should really have been something with English but Eng lit bored me silly. Nowadays I suppose I might do creative writing or something!

I am always being told....you shouldn`t look things up on websites especially about illnesses....my reply...is that I connect to a wonder woman on the subject....there is nothing I have asked that she can`t explain!.....and have had no explanations from the powers that be, it`s a no-brainer!  Eileen is much appreciated on here....

Yes this notion you shouldn't inform yourself on the Net - especially from excellent forums such as this seems ridiculous even condescending to me. Most reasonable people realise we cannot take the experience or 'advice' of people who are not medically trained as 'absolute truth' but we can certainly learn a great deal from the experience of others with similar conditions. It is also very clear that someone like Eileen has done tons of research over many years and can also relate this to her own and the experiences of others inways which many in the medical profession couldn't do very easily.

I for one would have likely taken months if not years longer to get a PMR diagnosis (was regarded first as probably Fibromyalgia) if I had not read a huge amount myself including good quality sites such as this - which contain professional as well as forum type information. I persevered after months of pain & stiffness and virtually 'told' my GP I was very sure this was what I had instead - and had deduced this from what I had read despite much material suggesting it would be less likely if I had 'normal' ESR & CRPs. He agreed with me and the huge improvement I have had in just a few days seems to be confirming this. If I had not myself spent time doing my own research I would still be hobbling about feeling very unwell.  As 'patients' it is vital we advocate for ourselves and regard doctors as not 'gods' but paid 'consultants' who need to carefully consider all the evidence (including references and info presented by us) and if necessary explain to us why our conclusions may NOT be 'correct'. 

I am MOST appreciative for the access to medical information which is available in ways previous generations could never have dreamed of - I am sure ignorance condemned many to much shorter and more miserable lives.

Best wishes to all

What really annoys me is the attitude some take when they know that pred successfully removes the patient's pain but they decide it isn't PMR - but they don't know what else it could be. Then too many are perfectly happy to hand out all sorts of painkillers, up to and including potentially addictive opiates, without a second thought even though the patient says it doesn't work. It's as if they believe that we make it up, that we WANT to take pred. So effectively they are often implying we are liars and leaving us with long term pain and disability that makes working/running a home almost impossible. 

I think I could probably work now - depending on the job of course - but even now, I'd probably work all day and sleep the rest of the time! Doing what I do on the 3 forums is almost a full time job at times - but I can ditch it or ignore things if I need to. I do read EVERY post - and am on a few other forums too because they provide very useful and interesting information. 

You are absolutely right, I whole- heartedly agree.....

?I have been taking pred for 5 years now.....second opinion from new rheumie......not sure what may be wrong.....he even said look at this graph, you blood tests show "normal" by then I had heard enough and said, this pain isn`t normal though is it!  As Eileen has said we can have LORA (late onset Rheumatoid Arthritis) when I asked if it could be this, just a NO!......think once again he had seen sero-negative blood test result, and went by that, but my sister is the same and has it!....We could all  without this added stress to know what`s really wrong....I know it`s not an exact science, ...but all rheumies diagnose in different ways, so where does that leave us.......looking it up!!

Keep well....

How very frustrating for you - I would certainly persevere with yet another opinion to be as 'sure' as you can possibly be.

Best wishes

It is interestng with any illness that predominantly affects women the level of 'credibility' of the 'patient' seems to diminish somewhat. Unsurprisingly perhaps this is especially so with anything in medicine which is vague, nebulous, and difficult to 'pigeonhole' as PMR and associated conditions of course - but also exists in the whole sphere of illnesses which as yet remain undiagnosable and not well understood. It is almost as if it then becomes our 'fault' if we don't fit THEIR current categories. Obviously (I think) a lot of quite implicit 'misogynist' notions about women's (in)ability to describe even their own experiences 'truthfully' remain quite pervasive within contemporary medicine. I'm not saying all oreven most doctors are like this - but regrettably many (still) are and would be the 'same' ones who happily labelled women 'hysterics' or 'neurasthenics' in the 19th Century. In a previous part of my life I was an historian and researched a lot in areas relating to medicine/psychology/psychiatry and the experiences of women.

To be fair my own brother is an ophthalmologist and he thinks specialists really aren't quite sure about a spectrum of auto-immune diseases including PMR and are certainly struggling to categorise them (as you have also said) - but that is no reason to treat people dismissively and

to not listen.

Cheers

A (useless) young female doctor I saw for about 16 months after my old doctor retired actually said, after I'd talked her into letting me see x-ray results and asking her why she hadn't told me more at a previous visit, "I didn't think you'd understand".  As though the moment you get grey hair, never mind being female, you lose all competence.  Another incident: a rheumatologist I encountered at a bones clinic said, when I asked her why we weren't told the scores for our spinal DXA scan (only given hip), "You don't need them".  

There have been a couple of reports in the UK newspapers recently about 2 women, one in the UK, one in the USA, who were admitted to the ER in severe pain and their assessment of how bad it was dismissed - apparently on the grounds that women over-egg it when in pain. Both of them nearly died - one had a ovarian torsion which is very painful and when ignored leads to death of the tissue and necrosis. The other had appendicitis which perforated and by the time she was properly examined she had developed peritonitis. The worst thing was that nurses were amongst the dismissive staff.

I'm darned sure that if PMR was suffered by a ratio of men:women that was the other way round (about 3 times as many women as men develop PMR) then there would be a lot more research and it would be taken more seriously. It isn't life-threatening - but it is very disabling and would stop men working. The economics of the workplace would have a significant effect.

Ironically I self diagnosed PMR, through the internet, many months before a doctor did, but when I saw the treatment I put it out of my mind because I didn't think that I would ever have a disease requiring such serious medication.  

Yes in the end me too - but now wished I hadn't procrastinated quite so long. I was thinking it would probably be 'better' if it was Fibromyalgia as no corticosteroids - but then realising of course it might NEVER go away. Other factor for me was I had two very impacting family 'disasters' over a 2-3 yr period - the last of which was the accidental death of my younger sister a year ago - and deducing that may have been 'the' possible fibro 'trigger' which is often referred to in the literature. I do wonder now however if some of these 'emotional/psychological' aspects may also be overrated by doctors (that whole 'female susceptibility' thing again). But anyway ultimately decided to give prednisolone a try as I was slowly getting worse and was miserable. Now I feel wonderful but still have considerable trepidation about what I may have to yet deal with. Still, aiming for some quality of life whenever you can get it now seems to me the only really 'sensible' objective.

It's extraordinary how many of us have suffered trauma of some sort, whether illness, accident (I had a broken leg plus a veritable cascade of unrelated unfortunate events and stressors) so something was going to give.  Could have been a lot worse than PMR!

I will also be interested to follow this 'theme' or possibly 'causes' of PMR and other physical illnesses. One of the things it highlights is how often people are going through difficult events and circumstances and while some do not develop a disease others might. I hope one day it is more possible to explain some of the biological reasons as well as the possible  'psychic', psychological and/or emotional ones.

It isn't "just" PMR we are talking about here - it is the full spectrum of autoimmune disease. There are none that we actually know what the exact trigger for the immune system going haywire is. The difference between the different diseases is which bit of the body the immune system attacks and as they identify what isn't right with increasingly sophisticated techniques they are realising that what they thought were separate diseases aren't and what they thought were associated diseases aren't either. 

But, stress of whatever sort can upset the immune system, just as environmental agents, infections, trauma do. It is pretty unlikely that one single event does it all but they pile up - and then you have to add in a genetic predisposition. Not everyone exposed to the same experiences develops x, y or z - that is blatantly obvious or entire families would go down with whatever.