Hi, PMR. As we all know there is no known cure for this horrible muscle pain and yes something should be done about it by the medical authorities as this forum suggests having not as yet got to the bottom of this one its that long. PMR is often missed by many doctors i have recently seen 7 and the only reason i was seen was because my wife spotted a clip on the Mail Online about a chap that had PMR for 2 years, previously a very fit guy he was reduced to just shuffling around and needed help. His father was a medical doctor and his brother but it was never picked up until a close friend pointed it out to him that PMR might have been the cause, The outcome was a course of prednisolone and now he is fit and fine. Sorry my name is Stan i'm 69, Mine came on suddenly early this August I was a keen Squash player but this was so disabling it had to stop. Xray and MRI was fine so I thought it might have been just old age but the pain got worse it was that bad my wife had to dress me put my shoes on could not bend, lift, turn the tap on, walking was a chore could not get in the car. I thought i was finished and that would be me for the rest of my life. The pain was unbearable and ran from neck across both shoulders down both arms to my wrists down both thighs back and front groin and knees l was in agony. Going back to my wife having read the article in the Mail as the chaps symptoms were exactly like mine i rang the doctor and before I could say PMR he new what it was. and prescribed the wonder drug after 5 hours of taking it my symptoms started to ease and the following day i was moving about much better 3 and a half months later the progression as been dramatic and i played squash this Monday. So within a fortnight of seeing my doctor having taken 20mgs of Prednisolone now reduced to 15mgs I am progressing fine I can put up with what side affects this may bring its just so good to get my life back on track. Doctors NHS should be be publishing leaflets describing this horrible illness as i am sure that there are many many more sufferers out there who have been wrongly assessed By doctors or just don't know what PMR is.
Regards to all
Stan
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STANSQUASHFANATIC
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hi stan,I have the same symptoms as you describe,I was a keen squash player for 20 years as well as being a cyclist doing upto 200 miles a week,in june this year all that came to a stop when I woke up one morning with very sore and stiff shoulders,after a week this was also affecting my hips and now my wrists and hands,I went to my doctor and was told it was probably wear and tear,I had to practically beg to see a rheumatoligist,I went along to see the rheumy who told me I had probably been riding my bike too much ,I suggested pmr and was told it could not be as mostly women get this, she did send me for a blood test I went back to my doctor for the results and she told me she had wonderful news for me telling me my blood tests are normal,I told her I was not happy and wanted to go private,I am currently seeing a private rheumy who is about to start tests,I feel I have just been unlucky in having the wrong doctor and nhs rheumy who do not recognise the symptoms I have[I am 71 by the way]hopefully I will now get somewhere it just seems wrong that I have been forced to go private.regards,kenny.
Look Kenny this is your quality of life that's at stake here. you don't have to pay to rectify this. Demand to see another doctor describe your symptoms again and if your happy to take prednisolone then its down you to you request a trial period that's what I did. The doctors are employed to treat your symptoms correctly and your description points to PMR. Good luck for the future.
Going privately won't make any difference if you get a rheumy who doesn't get the fact that one fifth of PMR/GCA patients never develop "raised acute phase reactants" - that's the blood tests they said were normal probably. Or that although about 3 times as many women as men develop PMR - still that means 25%, a quarter, of patients with PMR are men. If you go privately there are better and worse ones - most of them also work in the NHS.
One way is to tour the GPs available to you. The one I usually saw in the practice was like yours - except my "can't be" excuses were "too young" and "normal bloods". Another one saw it straight away. The answer to your lady GP is "How's that wonderful news - it means you still don't accept I have anything wrong but I am ill."
Look my blood count was normal that doesn't mean you don't have PMR test have shown that normal can be wrong. Its up to you if the symptoms point to PMR then it must be worth trying a course of predisalone.
Kenny, I agree with Stan. Although some do seek private appointments in desperation, you shouldn't have to pay. Just over a quarter of sufferers never have raised blood test markers. If you are suffering similar pain in the areas that Stan has described, all that is needed is to ask your Dr to prescribe a short sharp burst of 15mg of the steroid, Prednisolone - if you feel about 70% better within several days, sometimes within hours, you will have your answer. It never ceases to amaze me just how many sufferers succumb in spite of being super fit with an exercise regime like your's. I do hope you get an answer for your pain soon.
Hi Stan. I am 61 and have always had a keen interest in medical matters, but I had never heard of PMR or GCA when I developed PMR eleven months ago. Luckily for me, I was already seeing a rheumatologist for rheumatoid arthritis (Privately) so he spotted it straight away. Like you, I was pain free 24 hours after my first dose of 15mgs prednisolone. Thankfully, there has been more in the press recently about PMR. It would be good to see posters in chemists and doctors surgeries informing the general public about this condition, which I'm sure goes undiagnosed in many people and leads to a restrictive lifestyle as you experienced. Good luck with your treatment. I am also doing fine and am at 5mgs with no damage done (touch wood). Angela.
Hi Angela I started to reply but my post somehow vanished. Anyway glad to see your on the mend as well, So lets get the ball rolling by more of us supporting this forum. PMR Polymyalgia rheumatica should be spelled out to the medical profession and doctors need to communicate more with all their staff. My own case showed that 6 doctors in the same practice were unable to diagnose PMR how many more are oblivious to this awful pain and god knows how many cases go unnoticed.
Stan, you are the second person I have come across who has diagnosed themselves after reading the recent article in the Daily Mail. This certainly proves one thing.....we need lots more advertising! One of the main aims of the Charity is to raise awareness and this is slowly happening together with more research into PMR and GCA. They also promote support via a network of growing supports groups across the country.
If you, Kenny, Angela or anyone would be interested in getting involved in setting up such a group, you would have lots of support from PMRGCAuk........you could then have posters placed in chemists and doctors' surgeries' as suggested by Angela, and as already happening in those areas in which a support group is already in existence.
Meanwhile, it must be such a relief for you to feel so much better. As for you thinking you were 'finished and that would be me for the rest of my life" - I can so empathise, having spent several months bedbound and in a wheelchair, like you undiagnosed by doctors and a rheumy. However, a little word of warning: be very careful with the squash - doing too much exercise too soon could lead to a flare in the illness. Remember that the steroids are not curing the condition itself - they are just damping down the inflammation that causes the pain. PMR goes into remission when IT wants to and not when WE want it to. Having said that, we do often find that men can recover more quickly that us ladies, and all good wishes that you are one of those men.
Use the internet and look for 'PMRGCA'.
Six years ago there was no organisation. Arc where the only people who published two leaflets.
Now PMRGCAuk, PMR&GCA UK North East Support and PMRGCA Scotland. That is three Charities. There are also local support groups all which can be found on those websites. There is also a website for PMR GCA North West.
Six years ago there was one forum, Patient.co.uk now there are three. Healthunlocked, pmrandgca.forumup.co.uk and still Patient.co.uk.
They are all raising the profile (result articles in DM and other places), raising funds for research etc and all done by volunteers with PMR and/or GCA.
I live in the US & when diagnosed with PMR last March did use the internet & that is what brought me here. If you think not enough is done there even less is being done in the US. There are so many autoimmune disorders I can understand the difficulty is diagnosing, but it seems many in the medical profession are not listening to their patients. Having learned so much from this forum, I am surprised by the attitudes of many doctors & their lack of knowledge & use of prednisone. Prior to being diagnosed with PMR my GP put me on 60 mg of pred for three days, then 30mg for two & then less. He had no idea what was the matter with me & for me prednisone was not all that easy to take especially high doses. It took me at least three more months after this & two more specialists before I had an answer. It was frustrating, but what I learned from the experience was to be tenacious & keep trying until you get the answers you need. Many times you have to be your own advocate.
You wrote "If you think not enough is done there even less is being done in the US."
This is not quite accurate statement, there is quite a bit being done on your side of the pond.
Heavily involved is Mayo and Standford and others.
The American College of Rheumatologists (ARC) is in joint collaboration with the European Union League against Rheumatisum (Eular) and there is a specific amount of collaboration on research into cause and cure of both PMR and GCA. You can look all this up on the internet.
Within the next few months, new guidelines will be issued via this committee and then each country will go through the process.
You might also like to look up OMERACT.
In August 2008 this was launched:
"Patients from the UK & USA have collaborated to devise and launch a Global Online Survey, which will provide data, free of charge, to Patients, Researchers and Medics. It could be the biggest online survey (quantisurve.com/cgi-bin/pmr... of its kind ever and may help reveal the cause(s) of two debilitating, life changing illnesses."
You can still fill it in.
You might also like to read Rick's story and Kathy's bothof whom live in the US and their stories can be found in the Newsletter section of PMR&GCA UK North East Support.
Thank you for the links I will most definitely check them out. I base my info on what a frustrating experience I had trying to find out what was wrong with me & going through so many doctors prior to diagnoses. I have a good rheumatologist now, but it took me a long time to find him & as I said, the internet always directs me to European sites.
Try this link pmr-gca-northeast.org.uk/ then look on the left hand side box heading International Survey. I used those links and it is fine. When on here, look in the News section and read Rick's story, he is located in the states and also Kathy - she is also located in the states.
There are three forums, well used in the UK, this one.
you are quite right , doctors should go on courses or read up on fresh data regarding diagnosing PMR and other similar conditions. It isn't a simple case of 'one size fits all'.
I've been treated with Prednisolone for over 2 years for PMR , although my GP has never believed it's Polymyalgia as 'I'm too young 'and my' blood doesn't show any inflammation'.
I was off Pred a few weeks ago and the PMR came back with a vengeance, I saw a different locum GP who sent me for a barrage of blood tests and prescribed Pred once more.
I was feeling so much better , the Pred bringing almost instant relief.
I had an appointment with the usual grumpy GP this morning and I just wanted to ask him for enteric coated Prednisolone as I've been suffering awful indigestion, and I intentended changing to a different GP practise.
He refused to prescribe the enteric Pred and said it was proven to be a Placebo .
He then told me I might have Myeloma !!!! I'm still dazed, have to go for blood tests and take a water sample in the morning.
The bloods taken last month were all normal apart from my Vitamin D levels were low and my Serum inorganic phosphate was higher than it should be. He said at the time kidney function and bone results were all normal .
So fed up with doctors and now I have 2 weeks of elevated anxiety.
Let's be fair to doctors here: "doctors should go on courses or read up on fresh data" - they do. It is called "Continuing Professional Development" and is part of your duties as almost any healthcare professional. You have to achieve a points score every year for what you have done and if you don't, you are cross-examined by your professional body. However, for a GP they have to keep abreast of EVERYTHING, if they did a course for every field they see patients in and are expected to diagnose there wouldn't be a 2 weeks wait for a non-urgent appointment, there would be a 6 month wait - if you were lucky. And they only have a few minutes to recognise what you have.
In the case of GCA most doctors will never have seen a case in their practice, as it is relatively rare. PMR is a bit different, it is the most common rheumatic disorder in the over 60s. But it can be very vague in the way it presents and unless many things resemble what they read in a textbook it doesn't click. And there are a lot of underlying causes that cause the same symptoms. These days there is a tendency for doctors who trained about 20 or 30 years ago feel very dependent on laboratory results - and especially when they are non-conclusive they dither. The people you meet on these forums are the "difficult" cases, the ones who didn't fit the picture, too young, normal bloods and so on.
Enteric coated pred isn't "placebo" though, many GPs regretted agreeing to enteric coated pred being removed from their list and it IS available for people who need it. In the meantime it isn't so much more expensive than plain pred: 1 month 5mg white pred costs about £1.31, 1 month 5mg enteric pred costs about £1.86 - and the omeprazole that supposedly makes enteric coated unnecessary also costs about £1.86 for a month. So using white pred plus omeprazole costs more, especially because there is a dispensing fee to to pay for every different medication dispensed.
I assume you do take your pred as part of a meal? You should take it as early as possible but if it causes indigestion waiting for breakfast is a good idea - and many people who have been unable to take omeprazole or zantac have found that yoghurt helps a lot.
Yes I do take the Pred after breakfast and am now also using Greek Yoghurt , which is lovely.
I appreciate doctors see a handful of certain conditions in a lifetime of General Practice , my brother has Huntington's disease , but regarding my PMR , I have had it for over 2 years and he didn't follow the guidelines by checking for other conditions.
He even said those people who don't have the raised blood markers or are below a certain age group don't have PMR but wasn't prepared to arrange for me to see a Rheumatologist or suggest further investigations.
I should have been more assertive , I take that on board, but the symptoms and feelings of malaise and lethargy don't give us much fire and fight .
No you are right there - it seems like wading through treacle sometimes doesn't it? What a shame the locum wasn't a bit longer-lasting. I would say that the sooner your current GP retires the better - and do seriously consider finding a less grumpy one. That is an appalling bedside manner - I know manners are over-rated these days but that is NOT the way to break it to a patient they might have something that nasty. And yes - that should have been checked for sooner although the symptoms plus response to pred and return of the symptoms without pred does sound very PMR-ish.
I'm sorry to hear your brother has Huntington's - is it very advanced? It is a horrible disease.
A GP who thinks he knows more than expert rheumatologists needs avoiding if you ask me - it must be the week for stories about arrogant doctors who sneer at other doctor's opinions I think.
I'm very partial to Greek yoghurt with grilled vegetables, very Eastern Mediterranean! I restrain myself on the garlic though - I wonder how anti-inflammatory that would be?
Yes it does feel like wading through treacle at times.
The locum was super , she was so understanding and had a lovely caring manner.
I will change GP practise once I've had these latest test results back and know what I'm dealing with. The grumpy one isn't an old chap ,middle aged .
I was shocked to the core when he suddenly read through all my bloods and said I need to be checked immediately for Myeloma.
I think he noted that everything is satisfactory with my blood regarding inflammation and autoimmune markers and that needs to be ruled out before I see the rheumatologist .
My brother is mid stage and still living at home and surviving with our care. It is the most awful disease and I feel humbled at his bravery.
Greek yoghurt with grilled vegetables sounds delicious .
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