The million dollar question - how long does PMR last?

Bones, joints and muscles
1

Hi all!

You know how we are so often assured that PMR burns itself out in a couple of years? After reading Pandemonium's post I went off to do my usual searching the Internet for medical studies and found the one that is probably the answer to why we are told this despite the number of us who know, to our cost, it ain't necessarily so! If only it were!

A group did a study in the mid-1990s and found that they could divide the patients looked at into 3 groups. Group A had a low ESR at the onset of the illness with a relatively mild seet of symptoms, responded extremely well to 20mg/day steroids, were able to taper the dose easily and were off steroids within 6 to 8 months, experiencing very few flares in that time. They remained disease-free 2 years later. Group A represented about a third of the population studied.

Group B had a higher ESR (and another inflammatory marker was raised) and worse symptoms. They did not respond as well to the initial dose of 20mg/day but did respond very well to 30mg/day. They had more flares during the tapering period, requiring the dose to be upped by 5mg/day to control the flare before continuing the taper process. On average, they got off steroids in about 2 years and then remained mainly disease-free for the next 6 months or so. This group represented 44% of the study group.

Group C did not respond to steroids as well, having residual pain and stiffness even at 30mg/day and had considerable problems tapering, experiencing frequent flares, particularly once they got to 7.5mg/day and most needed to remain on steroids at a low-ish level for a long time. This group was about a quarter of the original group.

The researchers feel this result indicates 3 very definite presentations of PMR. I didn't note whether they noted a gender difference - we've said often here that men may respond very differently to women. They did postulate a few ways in which it might be possible to predict which group you might be in before starting with treatment because one thing they did suggest was that a good control of the inflammation at the beginning of treatment was associated with the longer-term prognosis. They seemed to feel that if you lost control of the symptoms with the steroids early on then it might well be indicative of a longer and more difficult journey down the tapering path - though whether this is the cause or the effect of being one of the group C-type patients is not clear. Nor was there any suggestion as to whether there might be different mechanisms of the PMR syndrome in the different groups, which is also a possibility. For example, another paper I read this afternoon did actually mention they believe there is a degree of poor adrenal function in patients with various autoimmune diseases including PMR - these could well be the Group C patients who need much longer treatment in the form of a \"replacement\" of cortisol production at about 5-7.5mg/day which is the amount your body should normally produce.

So there you are gals and guys - scientific confirmation that we do indeed respond differently to steroid treatment! Don't let anyone bamboozle you into reducing your dose if it doesn't feel right \"but Mrs Cuthesteroidose is already on 2mg/day after 6 months\". :lol:

what a lovely day it is here - nearly as warm as the UK might be tomorrow!

cheers, EileenH

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I know the answer: THAT............................................LONG :lol:

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Sorry Eileen, couldn't resisit it (see previous post). I don't seem to fall into any of those catagories completely, I'm halfway between Group A and Group B. I always have a vision of you, sat halfway up a mountain, in Italy, surfing away for our benefit - what would we do without you? Brilliant day here in Basingstoke with the promise of a beautiful weekend. Keep Well.

Lizzie Ellen

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Hi Lizzie Ellen,

Yes - I feel like that too! About the length as I've had PMR at least 6 years and no sign of it going away soon! AND I'm sort of inbetween A and B as well - but there I do wonder if the bit at the end about the \"not controlling the inflammation at the outset\" also applies if you try to get on with it (or, as in my case, are not diagnosed because you aren't \"typical\", whatever that means :roll: )

We too are promised a lovely whole week - not just weekend - except it is to get cooler as the airflow changes direction from south (and slightly damp giving morning fog) to continental (dryer and no clouds of any form). Our morning fog, however, is what you would call low cloud - lies at about 2000m or below and is referred to as \"high fog\" :lol: In the winter I look at the webcam on top of the mountain and if it is clear up there off I go - like all the other locals - to enjoy the sun. This is the difficult period until the end of November and the start of the ski season. I research because it's cheaper reading stuff online than buying loads of mediocre novels and stuff and anyway - it's fun and keeps the brain

going!

Happy weekend one and all,

EileenH

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Brilliant research Eileen. Wish I'd known this when I went to the rheumatologist in July and she wanted me to start on the steroid there and then.. Her claim, after examining me, that I could be off them before Christmas might have been right on. My symptoms then, were far less intense than now though both SED and CPR were up in the 90's. I'd never even heard of polymyalgia and what can you learn in a three quarter hour session to help you make a proper choice?

It occurs to me that some of this really useful info could be collated in a sticky thread - I think that's what they're called - which stays at the beginning of the list of threads all the time for newcomers to read. It could include normal starting levels of pred for PMR and GCA , the 10% reduction rule, the need to maintain or increase pred when facing something you know will be stressful and so on. Things your doctors or rheumatologists might not think to tell you.

I continue to be thankful for this website and all the wonderful dedicated people who welcome newcomers with such warmth and caring support. Plus all the time it takes to compose long messages and do the research to pass on.

Be well everyone in heart and mind anyway

Jill

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Jill - if you don't already know this, a lot of what you are saying is to be found on the UK northeast support site for PMR and GCA where there are articles by both doctors and patients. Those by doctors are fairly accessible to anyone and the ones by patients have all been checked by PMR specialists for accuracy. One is about what steroids are and do and how to take them. This forum, Patient Experience UK, has a blanket policy of not allowing links to be included in posts so I can't give it here without the post disappearing for an unspecified length of time - and even then it may not appear but be deleted. Just google the appropriate words to find it. If I knew anything about sticky threads I'd do it but I didn't even know about such things! :oops:

PMR-GCAUK has become a registered charity in the last 6 months or so thanks to some sterling work by 5 amazing women who had PMR and/or GCA and recognised the lack of information and knowledge on the part of GPs (and, in some cases, rheumatologists). There are superb resources on the site. There is even a DVD for you and your family and friends to find out what PMR really means to your life although since it is almost impossible to pay from outside the UK without it costing the charity a fortune it's really only available to people who can access it via someone in the UK. :roll: (not the charity's fault)

Several of the people who post on here have been closely involved in the start-up. Many of us feel it's a pity Patient Experience doesn't make it a bit easier to broadcast the info about the site but that's their perogative and we do try to point people in the right direction. This forum itself is a tremendously useful source of reliable information as you have already found - I have only seen a couple of posts with really dodgy content amongst the hundreds that are on here and that is part of the reason for their policy I imagine. Our general experience is that if you see anything on tinternet that tells you it's a fantastic cure they are probably after your money and you and it will be soon parted for ever if you follow it up! Some of the claims have been downright lies - one advert claimed to be for something approved by the NZ health care system! It wasn't, needless to say. Caveat emptor!

However - your rheumy was being very bullish claiming that you'd be off them by Christmas. You might have been but I'll lay odds she didn't have a vast amount of experience to base that statement upon. Nevertheless - it is an option that remains for you to fall back on. But - I haven't mentioned this before but I do have one thing I'd like to say to you personally: even if you feel flexible enough to try I hope you don't indulge ( :roll: ) in the coffee enemas! There is a distinct risk with them and I would hate to find that one had done any damage to you. There is little to object to in the rest of the diet and it certainly seems to have had some beneficial effect for you but the thought of the enemas makes my spine creep. Hope you don't mind me saying this but it's been on my mind for days, :hug:

keep well as you head into summer,

EileenH

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Hi Eileen,

A sticky thread has to be set up by the moderator or the administrator. The instructions are in the Thread Tools menu of their set up package. I guess it's up to the moderator how s/he organises it after that. Some invite members to add to the thread, sometimes a member writes the content, others set out rules for the forum, sometimes forums have several sticky threads. It would be an ideal place to refer people to the PMR-GCAUK. They would get there even if just the initials were included as it's the first website on the list when you google.

It's really your research that triggered the idea Eileen. Some of it, such as the study that found there were 3 different groups of PMR sufferers with different disease progressions and outcomes. Though info about tapering off from pred, is easily accessible I haven't seen the exact figure of reducing it at the rate of 10% anywhere else.

I've read most of the articles on the PMR-GCAUK website and most of the case studies and filled out the survey and looked at the survey results. They seem a very active group and it's such a big undertaking to set up something like that. Would be wonderful to attend some of the meetings.

Of course I don't mind you mentioning about the risk of coffee enemas. In fact I am touched that you would do so. Are you talking about the mechanical risk of not positioning it properly? If it's something else you've discovered, I'd really like to know, though I think I've given up on it. It was just too difficult to find a way to do it.

As for heading into summer, I'm not sure it's ever going to get here. It's mostly overcast and humid, with rainy patches. Everyone's complaining. Lucky you to be looking forward to snow. That's one of the things I miss most about England.

Hope it's going to be a great ski season

Jill

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Hi Jill,

The risks of the enemas do include perforation, yes, and at least 3 people in the USA have died as a result in the past. It is actually also a risk of endoscopy where they are using imaging so you can imagine the risk if you are doing that sort of thing blind - so to speak!! :oops:

A more common and likely effect is loss of electrolytes and minerals from the body due to the intentional result of the procedure. And to be honest - I'm really not sure about the effect of repeated such enemas on your adrenals in terms of the physiological stress they would lead to.

Whilst I'm sure the diet could well have an antiinflammatory effect there is no documented and REVIEWED evidence of the curative properties claimed by Gerson. The reports he made were based on telephone conversations with patients over a short period: a much later retrospective investigation looking at the records showed the 6 persons he claimed had been cured of cancer all died within a couple of years or less of - cancer! I get very twitchy when anyone makes miracle cure-all claims for anything that means they make money out of it! Even if it is just selling a book that tells the secrets. The positive effects get a mention but not the down-sides and any criticism is met with \"you don't understand...\" or \"you're biased\" rather than substantiated results. Don't get me wrong - unlike many scientists, I DO feel there is a place for complementary techniques within medicine but I use the ones I've tried and find effective in some way for me and look very closely at the ones that that don't fit in with the science before even considering trying them. You won't find me going to a practitioner who tells me \"I can cure this but you'll have to come back twice a week paying £XX a time for the foreseeable future\". The type of language used on the website or in the books is also often a good clue nowadays!

One of the nicer things about living here is that we don't get masses of snow down in the valley so getting about is no problem - and if there isn't lots of the natural stuff up the mountain, they help out by making the base and topping it up as necessary. :lol: Being on the south side of the Alps means the weather is rather better than in Austria!

EileenH

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Hello to all

You've been busy again Eileen!! I think you've missed your vocation. smile

Meanwhile I’ve had a few lazy days and feel the better for them.

Like you I’m skeptical on the plethora of alternative cures for various illnesses. It seems anyone can come up with a theory and write a book and then laugh all the way to the bank. But from what I’ve read and viewed I think gerson is one of the genuine ones.

What convinced me was a friend’s partner whom I witnessed during the 11 months of the therapy. He was a research scientist (in physics, not medicine). But he applied his research skills to his illness. For instance in the monthly reports he sent to friends and relatives, there was a photo of his thumbnail. He’d measured the growth per week and used it to estimate that the commencement of the therapy corresponded to the straight line which separated the upper brownish discoloration of the nail and the clear pink of the new growth.

He stained and made slides of he thought were necrotic cancer cells from the enema contents which he had studied under the microscope and compared them with examples from medical texts. There were graphs and other scientific detail but those were the things that stood out for me.

I doubt it will ever be possible for any group of scientists to replicate gerson therapy because: it's not trialling a medicine or one specific technique or the effectiveness of a machine or asurgical procedure.

90% of the work (approx) is patient compliance to a very gruelling and rigid set of guidelines which would be difficult to supervise. On the full cancer regimen you can’t compromise on anything including removing all possible sources of toxicity from your household and environment.

And anyway who would fund the research? The Farmers Markets? :roll: Coffee producers? Not likely.

As for the effect on my PMR there’s nothing I can be certain of yet. I am curious to know if it will work at this amended level or whether I would be noticing a difference had I been able to do the enemas in the first place. Which I will never now know. I’ve definitely benefited in the level of wellness I feel, but 3 months on, I wouldn’t say the diet and supplements alone have made a noticeable difference to the pain and stiffness. If anything it's increased at times.

I’ll give it until Christmas before I extend substantially the list of foods I eat though I have reintroduced fish and eggs and cut out the rye bread. Grains have never agreed with me.

Envying your blue skies over there. We've forgotten what they look like here. We did have some blue yesterday but it’s back to grey again this afternoon. The spring flowers don’t seem to mind they are bloomin' beautiful. I have a resident blue tongue lizard who lies on a stone slab amidst a blaze of pinks, purples, blues and whites. Lovely sight.

Regards to all

Jill

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Hi Jill,

Our morning grey is clearing slowly - but we live at 850m so if we were lower it would probably be worse. As for vocation - I'm a physiologist by degree and have worked in the NHS in both labs and research as well as being very involved with my husband's field. The entire family is involved in healthcare (medical physics diagnostics and research, nursing and a paramedic!) and I work as a translator now - meaning having to be able to understand texts and express them in clear English and my favourite is the medical and scientific stuff. So it's all joined up really - and what's best is I'll never have a better boss than I have now :roll: :lol: and I can fit in my work around the skiing in the winter!!! I ski any morning the weather is good (no wind or snow or fog) and work later - so they still get their overnight service when they need it without me feeling badly done by!

I had the symptoms of PMR for about 5 years before a diagnosis was made and found the symptoms varied from day to day and week to week. The constant was the sense of stiffness - difficult to get out of bed in the morning and stiffening up after a short time sitting plus back problems. Strangely, if I was driving it was far better than if I was a passenger so I can only assume the small amount of movement you have driving a stick shift helped. I also had sharp pain deep down in my hip joints which made putting weight on that leg difficult and tended to wake me in the middle of the night. Another problem was the foot pain but I only noticed that when I went to put weight on it for the first time - after walking about for a few minutes it eased a lot. Both of those pains came and went. All that lot disappeared completely within a couple of weeks taking steroids having improved immensely within 48 hours. It really was like getting my life back not having to be in constant pain and being so restricted in what I could do. Looking back on it it seems a shame it went on so long just because I was atypical - and would it have gone away more quickly if it had been caught at the start? I did go and ask about the thigh pain which was the first real sign quite quickly as well as the foot and back but it was missed by the GP, a physio, a rheumatologist and a musculoskeletal specialist (a fancy physio who was downright rude) then as well as the second rheumy 5 years later.

Now, after 15 months on steroids, it is the foot pain that is the first to appear if I try to reduce below the \"happy dose\"! Until the beginning of the very hot period I had been on 13.75mg every other day and was very comfortable but whether it was the heat, doing too much or just Sod's Law I have had to go up to 17.5mg/2 days and even going down to 17mg means the foot pain returns, mostly in the right. I'm considering asking the dr whether she thinks a cortisone injection in the foot might help and allow a drop in the daily dose.

It was my GP in the UK who was happy to treat it as PMR - the rheumy (who didn't listen to my report of the speed of relief with 15mg steroids) wanted to make it something worse and give me an old (cheap) drug with some nasty side effects needing constant monitoring by a rheumatologist and never going out in the sun (very helpful here) and which doesn't work in PMR! If there was any evidence it were something other I wouldn't refuse the nastier drugs but since the symptoms had shown a measurable improvement in 6 hours (I could walk up and down stairs without difficulty for the first time for months) neither I nor the GP could quite get why he wanted to rewrite the textbooks.

However - do keep us informed of your experiences with the Gerson diet. I'd be flat out just trying to deal with the juicing!! :lol:

EileenH

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Now 2 1/2 years in do not fall into any of your catagories , never had raised bloods , but the PMR seems to be getting worse again after being at a manageable level.....when will it ever go away :cry:

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Anniec - in addition to the post on this thread, I have also posted elsewhere about other retrospective studies (looking at other studies some time after they have been completed) which show that that middle group is probably about 50% of us and the time scale getting to the end of treatment runs from 2 up to 4 to 6 years. When it is said that flares are more common in the first couple of years that isn't an exact time scale.

I have also written about the fact there are two sorts of flares: a majority are agreed by the experts to be associated with dose reduction, but the underlying autoimmune disease also tends to wax and wane and if it gets very active would tend to break through and cause trouble again even though you might have been happy on a given dose for some months. Most people also notice a deterioration if they are under any form of stress and some - me included - get worse symptoms in certain types of weather (changing to damp is worst).

A few people recently have reported that they were on a reduced dose and had a few niggles but felt - as you said - that it was manageable. However, some of them do have elevated blood levels and looking at them over a period of months you could see them creeping up until a point was reached where the symptoms broke through and there was proper flare. I think this probably happens round about the point where the dose you have reached is the longterm maintenance dose to manage the PMR - after all, you are not cured, it is a question of managing the symptoms until the underlying autoimmune disease chooses to go into remission, the same as is the case in rheumatoid arthritis. But if you are very slightly BELOW the lowest fully effective dose it is a bit like a bucket under a dripping tap. Eventually it will fill up and overflow.

Many of the experts emphasise the important of an individually tailored approach as there are so many variables. We all have different and probably varying levels over time of the autoimmune disease itself, we all respond differently to the steroids, not only in terms of the dose we need for apparently similar disease levels but also in the side-effects and I'm sure we all have varying expectations of what is an acceptable quality of life. This part is the bit I see to be missing on the part of the average doctor dealing with PMR and GCA in the UK. Many appear totally ignorant of research and opinion in the rest of the world and want us to be the same as other patients on steroids and, because what we have is almost totally invisible - there are few objective criteria to assess it - can't accept that we feel the way we do. Even rheumatoid arthritis patients have this fight with rheumatologists: \"there's no swelling so it can't be hurting\" is all too common a response. They ask a few questions and if our responses don't fit their little box it hasn't happened/doesn't exist. I had symptoms of GCA pre-diagnosis with PMR but I didn't know then what I know now and they weren't part of the examination battery of questions. So they didn't get the opportunity to tick those boxes - I denied visual symptoms and headache, but I have had migraines all my life so wouldn't have thought about them anyway. And what I did experience wasn't a perfect match. A bit like looking up a word on internet dictionaries - you have to spell it right, it has to be a perfect match to find it. :roll:

So maybe it did go away while the pred was a bit higher but you didn't notice (though unlikely) or you are in the final group mentioned where you need a low dose for a long time. I've had it for more than 7 years now - can't say it has gone away in that time. And I'm on 8mg of methylprednisolone now, equivalent to 10mg pred. What are you on?

Eileen

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Really interesting Eileen -not quite sure where I fall in the groups though...it's late and I'm tired so little grey cells won't play! I did have severe symptoms with regard to both PMR and GCA but experienced a good response to the steroids at the outset with very high markers normalising very quickly but then of course it was a high starting dose at 40mgs. I've wondered if adrenal insufficiency occurs due to some infection or virus (even something you're not aware of) and let's PMR in. Then once on steroids, although they get control of the inflammation, the adrenals get a double 'bashing' so it becomes even more difficult for them to recover and hence for us to reduce beyond a certain dose. Will read your post in more depth when I have more time but it certainly gives food for thought. Love the idea of us all getting together via Skype on New Year's Eve by the way! :D

Shirley

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I'd love to know where I fall, too, Shirley. Eileen's post ought to be distributed to all GP'. She is so right.

I've said often before and elsewhere that I am so lucky with my GP. Before PMR I'd never met him!!.... Only ever had to go to the surgery in the thirty years before PMR because of severe reaction to both wasp and bee stings ( wonder if that is significant? ).... So just saw whoever was available.

I sometimes think that now he knows me better than I know myself and it makes so much difference to be able to talk about things in general and hobbies and interests and how PMR affects such things and get an interested and sympathetic hearing.

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Betty

Perhaps the wasp/bee stings/mosquito bites are significant - I've ended up on antibiotics very many times due to severe allergic reactions to stings/bites! :roll: Do hope those little mites appearing out of you laptop are not the biting kind! :wink:

Shirleyxx

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But antibiotics will only be any use if it was a dirty wasp/bee sting - has nothing to do with the immune response you demonstrated with a violent reaction to the sting where the redness is due to massive arrival of blood flow to fight imagined invaders not actual bugs.

But it is an interesting concept asking whether we may show a \"hyperactive\" immune system prior to developing an autoimmune disease.

Eileen

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I have only been precribed ABs once for stings and, as Eileen says and so did the doctor, that was in case it was a dirty sting ( bee in boot ). Once we found Zirtek worked for me I just make sure I have some ni the fridge and treat myself. If the redness and swelling goes in a couple of days I assume I'm ok. Last time I bought some in Boots I was offered \"something new\". Can't remember the name but while Zirtek works I'll stick with it.

Interesting thought, hyperactive imune system. I've often jokingly said that mine must be on red alert; I've had nothing but the childhood illnesses and 'flu once until PMR and used to say I was the lucky one in the family as mother and both sisters suffer (ed ) with hay fever and I do not. That will teach me to boast!

Seem to remember reading somewhere that not getting any childhood illnesses is not necessarily good news. Can't remember what it was connected with. Would that perhaps indicate an overly well and early developed Immune system? Only know one such person well and until she became diabetic in her eighties was the original strong as a horse type.

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I think the idea it is good to get childhood illnesses is that the immune system needs the practice! Most babies who are breast fed don't get things their mothers are immune to as long as they are being fed enough and the antibodies are being obtained through the milk. That is the biggest plus breast milk has over the bottle. Once that stops the child starts to get colds and things as their immune system gets the hang of what it is meant to do on its own. Naturally acquired immunity is supposedly no different from the immunity developed from jabs but it is a fair question as to whether giving 3 different types of disease at the same time in a jab can be equated to having the same 3 diseases at different times as you would naturally.

Francesca didn't get chickenpox at 3 when Natalie had it and they were in close contact when Nat was at her most infectious (24 hours before the the pock appears) but did get it a few years later when in contact with her cousin who was well past that stage. Difference? She was breast fed first time round. You also need a fairly stiff dose of most things to develop the antibodies so a very mild dose is also not necessarily good news.

I think I had everything except mumps and scarlet fever but have very little since.

BTW Betty - was the \"new\" stuff more expensive? I find Boots' pricing policy positively disgusting! Their \"own label\" acyclovir is almost as much as Zovirax :roll: so I go to a small independent chemist on principle :wink:

Greetings from a picture postcard winter!

Eileen

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Meant to ask - re \"dirty\" and \"bee in boot\". Bee in car boot or footwear type boot? Was he suggesting you had dirty feet? :shock: :D

Eileen

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Clean feet; filthy boot. Who knows about the bee?