Has anyone thought of starting compiling individual list of the start of symptoms, details of the condition flaring up and other observations that started before or after diagnosis and then treatment. Having jus been "diagnosed" with pos. PMR. (The Rheumatologist and my GP explained that there was no definitve test to prove one had PMR just that if steroid treatment helped then it was most probably PMR!) Since being told that I might have PMR I have heard of so many people who know people who have suffered with it that I wonder why the medical world know so little on how and why PMR.
By starting a PMR, CGA List Blogg perhaps it could be sent to the medical profession as a basis for research and the rest of us could compare notes. For instance, I came down with it over several months and thought at first it was an age related problem (I'm 74) but it got so bad that until two weeks ago I could hardly lift my legs, dress, or get in and out of the car! Predisnone brought me back to life within a couple of days! HOWEVER, my symptoms did not affect my arms, neck or shoulders. I was stiff from my chest down.
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suracon
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suracon, I really sympathise with you. Thinking back to the excruciating pain which I was told was a virus over three months I could not believe the miracle that happened when I started taking steroids. Unfortunately PMR is not very exciting regarding research, it is not life threatening and does not affect young people, also give people steroids and the pain is sorted out pretty well. Having a well known celeb who has PMR and lots of publicity often helps awareness, rather like Terry Pratchett and dementia. Having said that research is being done into the disease and new guidelines on how rheumatologists should deal with it are coming out soon. The last ones were produced in 2010 or round about then and in my opinion could do with updating, particularly with the bone density suggestions. As auto immune diseases go PMR is not that bad.
this may sound funny, but is it possible, for a shock to start pmr, I am saying this because. I got a shock but was ment to be a joke. and about 4/5 days later I started with groin pain thought it was a strain so I put up with it for a couple of weeks, then a visit to docs who said the same. then started with pain down the inside of my thighs. and in to my hips. docs again, pain killers. got no better, sent for phisio. still no better sent for ct scan. said it was bursitis, injections into both buttoks. in between all this I started with pain in my front shoulders, but ignored this for a while, so after about 6 weeks the pain in my legs and hips started to come back. back to docs complaining about buttok pain coming back
also told him about shoulder pain, so off he sent me back for more bursitis injections, but when I got to chapel allerton I was told I couldn't have any more as I could loose the feeling in my legs ( OR WORDS TO THAT EFECT) but during all this I was speaking to my niece, who is a gp in another part of the country. she said it sounds like pmr to me. off I goes back to docs and suggested pmr. he didn't say much but put me on stronger pain killers, still had pain goes back again then he says we will treat you for pmr and give you steroids, sure enough in 3 days time NO PAIN. all that was 3.5 years ago so all in all it to 18 months to get to the diagnosis. HENCE BACK TO WHAT I THOUGH IT WAS SHOCK THAT STARTED IT OFF what do you think started on 20 mg now down to 2mg.
Yes, I think some sort of physical shock, perhaps coupled with other stresses, could trigger pmr. I think my pmr started after I had a broken leg. I recovered (it wasn't a bad break) and went back to work, very active, and quite suddenly developed pains. I would have trouble standing after being seated for relatively short periods of time, then got such painful neck and shoulders I got referral for physio - only after a few sessions the physiotherapist gave up on me and suggested I see a naturopath and also get massages. I had trouble getting out of bed, getting into and out of the bath, backing the car out of the driveway. Repeated visits to GP netted nothing but prescriptions for heavy-duty painkillers, which I didn't fill. Finally (about a year on) a new GP within a week and some more tests suggested pmr, put me on starting dose of 15, and now I am feeling human, and beginning the journey of prednisone tapering....
Believe it or not, there is a lot of research going on into both GCA and PMR.
If you visit the website PMR GCA UK (the National Charity) the organisation which runs this part of Healthunlocked, you can read up on some of the current research which is ongoing.
There are links to other websites from there and those websites also carry research information.
You can also volunteer, through your GP, to take part in Clinical Trials - again just use your search engine and put in Clinical Trials and read up on how to volunteer. Members of some Support Groups are currently taking part in a trials of a steroid sparing agent. They also take part in surveys for researchers to gain knowledge.
You can contribute by joining one of the Charities, it does not cost a fortune to join.
If you look at the right hand side of this page, you will see there is a paperback book now available via Amazon and it is also available from PMR GCA UK.
There is also a booklet 'Living with PMR and GCA' available.
Whilst the three Charities, PMRGCAUK, PMR GCA Scotland and PMR&GCA NorthEast Support - who all work together and have started up support groups throughout the UK - have only been in existence for approx 8 years they have managed to raise the profile and contribute to all the research. You can read all about it on their respective websites. All of this work has been done and is being done by Volunteers who in the main all have either PMR and/or GCA and give freely of their time.
If more people would join, then more could be done.
Finally take a look at this quantisurve.com/cgi-bin/pmr... an International Survey on PMR & GCA, you might like to fill it in.
Suracon - I decided to keep notes from day 1, ie the day of my first Drs appointment when I took as many details as I could recall of when my symptoms started, that I had had a cold type of virus etc. My diary is completed daily. It includes medication reduction, blood test/scan results, Dr and Rheumatologist's appointments, and my daily routine. This also helps to remind me when the Dr asks 'how long have you felt like this?'. My husband accompanies me often on appointments and he says I 'play down' my symptoms but in one way pain is quickly forgotten and once it's gone it's gone. Pain is also frightening. My notes remind me that I have woken up with a terrible headache, my jaw aching (convinced these are GCA symptoms) telling my husband I am going to go to A&E. I agree PMR does not have a high profile, and when you say you are taking steroids I think folk are curious why we would be body building. Good luck with your journey. It's rather a bumpy ride but stay positive.
Despite the fact it may not feel like it, there is a fair bit of research going on about PMR and GCA in the UK alone! There are groups in Spain and Italy who are very active as well.
It is an autoimmune disorder and autoimmune disorders are very difficult to understand - there are more than 80 types including Type 1 diabetes, rheumatoid arthritis, coeliac disease, lupus and thyroid disease to mention just a few. The cause of the immune system "going wrong" is not known - and that alone makes research difficult since there is no one thing that is in common. Generally it is thought that a lot of things chip away at your immune system - and finally it crashes and gives rise to a set of symptoms that gets a name depending on what they are. This a good simple introduction:
There is currently an international project going on to classify symptoms and treatments which both UK rheumatologists and patients are involved in. Research doesn't just happen - it requires funding and funding is increasingly difficult to get as there are so many things competing for the money. For pharmaceutical companies to to do it they have to think there is some way they will recoup the money they spend in the form of sales of a drug. To develop a drug means you have to know something about the mechanism of the disease - or having noticed that something that is being developed for something else has a side effect that matches in another disease. A side effect with one disease may be the desired effect in another! Causes are found by basic research in universities or the like - and the funding for that is hard to come by.
The northeast of England support group has helped with funding for a medical student to participate in GCA research in Spain for a year as part of an intercalary year during his degree. Being part of a support group charity - and the forums - also helps because we form an accessible group for the rheumatologists who are involved with the charities. Members of support groups have become involved in the work that is going on, we are involved as expert patient advisors and we pass on what we have learnt from the other patients we meet.
The groups provide a source of contacts for surveys and polls and research - a paper has been published in the last 6 months about the effect PMR has on us physically and mentally based on interviews with a lot of patients from South Yorkshire: "I suddenly felt I'd aged: A qualitative study of patient experiences of polymyalgia rheumatica" by Helen Twohig and her colleagues. It isn't generally available for reading unless you want to pay for access to the journal - but is very good, presenting the experiences of over 20 patients in their own words. The blurb says "Some aspects of patients’ experiences challenge conventional understanding of PMR." These, and other, GPs and rheumatologists are hearing our experiences and things are changing. The guidelines have changed in the last few years and are changing - a new international lot are in progress.
By the way - there are/have been well known people with PMR: Mrs Thatcher developed it and so did one of the senior Royals (Princess Alexandra I believe). Mrs T developed it in the late autumn and it is said had recovered by May of the following year! It was probably scared! The Royal was just seen to stop doing public work. But no offer of patronage of any of the charities was forthcoming! Increasingly there have been articles in the media by journalists who have developed either GCA or PMR - I suppose it is debatable whether they are well known!
And the charities are growing: 10 years ago there was only the charity in Scotland. Today there are already 2 in England as well, the northeast of England group was the first to achieve charitable status and you know about the National group which was formed a few years later. They provide valuable contacts with the research groups and the NHS.
Since you use a pseudonym how can I know if you are celebrity in real life?
Of course, if you have ever been on the TV, even in the background during an interview or in a general shot at a public event, then you probably DO qualify. But applying for a reality show would be the best answer - you are bound to be taken on for the eliminating rounds - though whether you sing/act/whatever badly enough to get to the finals I don't know.
I'm so sorry and I do realise how demoralising this must be to you - but you must be able to qualify somehow...
Oh I can sing badly enough I assure you, just ask my kids! My son, who's a mean guitarist and not bad singer said to me one day - good job I took after dad and his musical traits, not yours! How cruel our offspring can be!
Mind you, my shoulder's nearly as damp as yours, so there's one thing I can do - listen!
Hope your weather has improved from yesterday! We're contemplating the annual pilgrimage and wondering how best to avoid Calais/Dover/Kent. We start in Dorset so Dieppe looks appealing. Hull is just stupid money so maybe Harwich to come home...
Dorset is lovely today! Bit iffy next week though. Dover/Calais is a complete nightmare at the moment, so need to find alternative if poss. Poole, Portsmouth or Plymouth would be better, but expect the prices will be horrendous!
So we gather - although we also suspect they aren't mentioning one half of what it is really like! Cherbourg is a long way from Italy - Dieppe is not much further than Calais and shortens the drive the other side. There used to be a Zeebrugge to Rosyth ferry - brilliant and 10 mins from the ferry terminal to our daughter. But of course, as soon as we started wanting to use it it was stopped...
Wow. This is really interesting Eileen. It's great to know that work is being carried out in so many areas.
I have a question. Would you happen to know if I can find a basic expanation of PMR in Spanish? We are presently at our home in Panama, Central America and I would like to be able to describe the illness to a local friend who is not totally fluid in English.
I was going to say no - then a light dawned - Spanish is an official language in the USA! Are these of any help? You can toggle between English and Spanish for both of them - look towards to top right corner.
Hi. and welcome to the group. Like you my onset was over several months and all in the lower body area. I had hip pain for 4 1/2 years which I assumed was to do with the damaged discs I had suffered previously. When I eventually said something to the doctor in passing when having a routine blood test he added a couple of tests and gave PMR as the answer. It was brought under control and I was OK. However it was a different story recently when I had a huge flare up, but this time it was all in my shoulders, arms, head, neck and even eyes. There was minimal discomfort in the lower part of my body. I have been told that I probably have GCA as well but no tests have been done yet. I'm just thankful that it is back under control and the pain has been reduced to a tolerable level. The fatigue is the biggest problem. They say it hits after a certain age group, but I wonder if this is true, because people don't go to the doctors straight away. They either think it is to do with age, or a pulled muscle etc. I also wonder if it runs in families. My sister has been diagnosed with ME, but her symptoms are similar to mine. My daughter is well before the age group, but has all the signs. I think a proper study would be a really great idea.
There are almost certainly a lot of people with it who are under 50 - but with the labels fibromyalgia, ME/CFS, thyroid, depression and "it's your age" i.e. pre-menopause. And the large number of heart-sink patients who have nothing specific except a GP who gets bored easily and thinks someone is trying to get out of working. That isn't a criticism of GPs in general by the way - it is a reality that some do classify women entering middle-age as hypochondriacs.
WHich is why it has taken so long to get research done on this disease - it is perceived, apparently wrongly, as mostly afflicting elderly women, who are "useless" to society!
This is a very friendly and helpful site for a newbie ( this is my first posting).
I have had increasing pain in my neck and shoulders for 8 months, a neck X-Ray indicated 'wear and tear' to be expected for someone in their 50s.
My GP surgery (rarely saw the same person twice...range of GPs and Nurse Practitioners) prescribed a variety of pain killers - paracetamol, ibuprofen and more recently tramadol. They did not affect the pain and I was also prescribed diazepam and amitryptyline to help relax the muscles. Nothing had an impact on my pain - which was getting worse - now in my back, ribs and top of my thighs. I was frequently in tears getting out of bed in the morning and felt as though my body was that of a 95 year old. Commuting into my job in central London became increasingly difficult ... Getting dressed, putting on tights, reversing the car, pushing heavy swing doors...
Off my own bat - and in growing desperation - I spent a small fortune trying acupuncture, osteopathy, physiotherapy, deep massage and Alexander technique lessons - because the cause of the pain was not 'mechanical ' nothing worked.
Four weeks ago, I explained to another GP than I needed a diagnosis - and help. She ordered an MRI (not yet had) and blood tests. My ESR and CRP are both raised significantly. I researched reasons for these tests and realised that I probably have PMR. Yesterday, I saw another GP and requested Prednisolone as I believed I have PMR; she was a bit non-committal but she's has prescribed 20mg daily for 2 weeks.
I started taking them this morning and am praying they work in the next few days.
I am seeing a rheumatologist next week (privately - because I cannot wait for 6 months) and hope he will confirm diagnosis and make some sensible suggestions as how I can get 'back to normal' .
This site has been very useful in helping me identify a probable explanation for my pain. I do wish GPs were better informed about this condition which my save lots of us pain , time and money
If the pred your GP has given you works as it should in PMR that pretty much confirms PMR and there is little point in spending money on a private rheumatologist - we can tell you about getting back to normal with PMR, probably far better than any doctor! There is no other treatment - you manage PMR with pred and lifestyle changes. The underlying cause of PMR will burn out at some point in the future and you will be "back to normal". In the meantime you have a new normal and achieve it with sensibly used pred provided by your GP - it is common for GPs to manage PMR unless there are problems. There is no way of speeding up the end of the cause of PMR - it comes when it wants and goes the same way.
Thank you very much for this advice. I have been on pred for 24hours and already it has made a significant difference - confirming a diagnosis of PMR.
Unfortunately the appt with the rheumatologist is tomorrow - too late to cancel - but until Friday my GP was not prescribing pred and my pain was becoming intolerable.
Anyway, I will see the consultant on Monday and then - in order of preference - I hope to manage my condition with the help of this site and my GP.
I have been prescribed 20mg pred for one week and then reduce to 15mg for a 2nd week. This differs from the advice given by the Bristol Consultants (2012) which is to start at 15mg and then slowly reduce.
Could you please advise on a safe strategy for reducing pred prescription?
Susie, it sounds as though the steroids are already proving successful - it is usual to expect around a 70% reduction in pain within a few days of the starting dose or even within hours in some cases.
However, if the improvement continues, don't be tempted to reduce from the 20mg dose after just a week - you need to remain on the starting dose for a good 4 weeks to ensure that the inflammation is completely under control and remains under control. Blood tests should be repeated to see if the markers have improved and, if so, used as a guide, together with your symptoms, before that reduction. If all is well, a smaller reduction to 17.5 rather than 15 would be wiser.
Take a look at the BSR Guidelines for the Management of PMR (available on the PMRGCAuk website pmrgcauk.com).
Also, if your diagnosis is confirmed, you will find a lot of helpful advice in Kate Gilbert's book 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' available on Amazon or direct from PMRGCAuk. All royalties from the sale of the book are donated to PMRGCAuk.
There is also a booklet 'Living with PMR&GCA' available from PMRGCA North East Support.
Lots of good luck wishes for a definitive diagnosis at your appointment tomorrow, and I hope you continue to improve.
The 20mg dose should really hit the inflammation hard and reducing to 15mg after a week shouldn't pose any problems, that is a normal reduction when using pred. It is from there on that you have to be careful and resist any attempts the GP may make to reduce you any faster than the Bristol scheme suggests - even that may be too much for some people and is why we suggest on the forums that an even slower tapering is very useful to avoid both steroid withdrawal and flares problems. It is slower in terms of the size of steps taken, not necessarily the time taken, flares and query flares due to steroid withdrawal are avoided so the reduction can be a steady downwards path. It also identifies the goal more accurately: the lowest dose that manages the symptoms as well as the starting dose.
Some GPs seem to think that PMR responds to a short dose of pred, like other inflammatory illnesses where it is used and then try to reduce to 5mg or even zero in large steps over a short period. PMR is a chronic disorder and must be managed using pred, not other medications and you are looking at years not weeks or months. Some people are lucky and it goes into remission within a couple of years or less - but a majority of patients need 4 or 5 years and German rheumatology textbooks say that! Some people need longer as you will have seen from the forum - but I'm on 5mg and feel well with no obvious side effects now. Being on pred isn't as bad as some will try to make out.
Do try to resist being handed multiple pills - you need calcium and vit D supplements, from your GP, but nothing else for "bone protection" until AFTER you have had a dexascan. Depending on the results of that you might need something else but that is by no means certain - many of us have never taken anything else and are fine even after 4 or 5 years of pred! If the pred upsets your stomach - try yoghurt, plain, full fat bio Greek-style is my preference. The doctor's "stomach protection" options of a PPI can cause more problems than pred! If you do need something more consider ranitidine (Zantac), same effect, fewer side effects.
You need to be on 15mg for about 6 weeks - until all symptoms are reduced as far as they are going to and your blood markers are stable and as low as they'll go. Then you can think about reducing. But remember - the improvement is considered OK at 70%, it does not mean you will be totally pain-free and back to normal, just much much better. And you have to do your bit - management of PMR is up to you too. Rest and pacing is essential, your muscles remain intolerant of acute exercise and if you do too much because you feel well you will know about it the next day!
Thank you this is really helpful information and advice. I really hope the rheumatologist tomorrow is of the same view.... I'm preparing my questions for him!
Be gentle with him - if he's a pain you can at least leave him behind without too much difficulty! OTOH, you are paying for him NOT to be a pain! Then you can concentrate on training your GP practice...
Everyone I speak to has a different story, different treatment and different side effects. So yes, I think it would be useful to collate and publish all the data so that sufferers could question their GPs/Rheumatologists to get better/quicker treatment. This is my story:
1. Started with pains in shoulders. Went to a physiotherapist who said I had a bruised nerve. She gave me manipulation & exercises to do at home. 4 months later I was exhausted with lack of sleep due to shoulder pain, could hardly walk, could hardly dress myself & had to ask friends/relatives to help with showering & hair washing.
2. Said goodbye to physio and went to GP. He sent me to Musculo-Skeletal Dept of local hospital. Cortisone injection in one shoulder & later, the other shoulder. Brief improvements only.
3. Back to GP, who sent me (at last) for blood tests. Results were positive PMR.
This long drawn out diagnostic exercise had lasted a painful 8 months.
4. GP recommended a Rheumatologist immediately (I paid for quick appointment) who did further bloods and put me on 40mg Pred. Two days later I was pain free.
5. Started to blow up like a balloon. Two months later, started to have palpitations. Rheumy said it was nothing to do with Pred. However, it didn't go away and was quite frightening, so GP recommended a cardiologist.
6. Visited cardiologist and received ultrasound and underwent stress (treadmill) test. Cardiologist also recommended angiogram which proved heart was clear.
7. I read a report on the internet from a Dutch trial, showing that patients taking more than 6.5 mg per day of Pred were prone to palpitations. I asked my Rheumy if this was the case and he dismissed it completely. However, when the Rheumy later reduced my Pred. to less than 6.5 mg, my palpitations magically disappeared!
8. Now almost 3 years after the start of my pains, I take 5 mg per day and am virtually pain free. I take Alendronic Acid once a week and see the Rheumy every two months.
9. I have a constant ache on the right side of my head. Am still 1.5 stones heavier than I was when it all started. Am tired most of the time and often sleep during the daytime. I have a constant pain in my left groin and upper thigh and am going for ultrasound this week. My legs and buttocks ache. I had to have a tooth extracted recently. The root, which the dentist showed me, had become floppy. The dentist was very scathing about Alendronic Acid and its effects. I also find my memory, which was always very sharp, is becoming
s-l-o-w-e-r. Is this PMR, medication or age? And what are the long-term effects on your bones, joints, teeth and, possibly, brain?
More information from a study of data might assist all of us in the future. Does anyone have any ideas on how this could be achieved? Perhaps through PMRUK?
See "This is Ray's Story" in the Autumn 2012 PMR/GCA Newsletter, where I listed events in chronological order as they happened to me! Subsequently I have reached Club Zero status, got my licence back & life has returned to something like normal. Post steroid pain still bothers a bit, but I am given paracetamol for that. Your idea of a "blog" sounds sensible & my article together with similar notes could all be collected in it & would make a useful resource. If it gets followed up, I would like to be informed & would willingly contribute to it. Please keep us posted & I hope it comes about.
I won't recite my story as it has been told many times, but would like to praise my GP for provisional diagnosis although only 46 with normal bloods. It was when he referred me to a rheumatologist that the skeptism started, and took 14 months from first onset of symptoms till Prednisolone was prescribed. As of yesterday I an now of "official age" to have my PMR & GCA. Mines has been attributed to a flu vaccine I had 4 days earlier. I'm now almost 4 yrs into my PMR journey, and it shows no signs of going. I sometimes wonder if the busy shifts I work slow it going into remission.
Bizarrely I reduced my amitriptyline the last 3 nights, which for some reason seems to have triggered my jaw cramps again, but previously it was just eating, today talking brings it on, so being quiet today 😁
I've started one. More for myself than my doctors. The progression is what I don't want to forget and my memory is so bad now. I also want to remember so I can help others since there's so little support here in the USA.
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