Is it me or are the doctors as confused as we are?

Hi Kate

I read this with interest, how old are you? I'm 42 and have had PMR for just over 2 years. I really thought I was getting better this summer, I have heard much about how this can \"burn itself out\" after 2 years and now the PMR has returned with a vengeance. I've been in quite a lot of all-over pain for the last few days and have reluctantly got the Prednisolone out again, 5mg is helping a bit.

You're quite right, the GP and the Rhuematologist don't really have much to offer except Ibuprofen & Prednisolone and it seems it's almost up to me how much I take of either. Regarding a diet, I have read with interest but not managed to really make a go of \"A Doctor's Proven New Home Cure For Arthritis\" by Giraud W Campbell (out of print but I found a used copy on Amazon) and it's follow up by Marguerite Patten \"Eat To Beat Arthritis\". Possibly because I wasn't that desperate at the time, although I am now.

Rose

Hi Rose

Thanks for your response. I'll definitely follow up the diet books you suggest. I'm hoping I won't have to give up tomatoes! Practically everything we eat has got tomatoes in it.

I'm nearly 56 by the way, so I'm certainly a good deal older than you but even with me the doctors were a bit doubtful about the PMR diagnosis. As you'll have seen, many of the information sources characterise this condition as a problem of the elderly.

Well, in that case I think elderly people have got enough to cope with without this as well!

yours

Kate

hi Kate

I sooo agree with everything you say. I feel that WE are educating the doctors and there is simply not enough research going on re PMR. Statistics show that it affects mainly people over the age of 50, female and living in the Northern hemisphere but as this forum shows that is not always the case. Statistics also apparently show that this thing burns itself out in two years or so, but again, I don't see any evidence of that on this forum. I'm due to see my rheumatologist again end Sept and I think I'll print off some of this stuff from this page and show it to him. They are so happy to prescribe steroids to stop the pain and that seems to be all they are intersted in. Steroids only mask everything, they cure nothing, and cause many other unpleasant things. I feel the only way forward is to form a pressure/self help group but the organisation on a national level would be a huge task. I'll do my bit... is anyone up for it?

Hi Kate,

Guess you've probably read my previous postings (Only 48, Feeling 84; On the Road to Recovery; and Recovery Update - Can Run Again). I agree that PMR is one of those illnesses it's hard to explain. I was looking for work at the time my PMR started and the JobCentre suggested I go on Incapacity Benefit because they could see how much pain I was in. My doctor gave me a sick note for three months (May to July) and I was awarded Incapacity Benefit. They then sent a form full of questions asking for a description of my illness. Filling this in was fun (NOT)! They also asked for a Med 4 Certificate from the doctor. However, as my blood test came back normal, she would only allow a Med 3 Certificate (sick note) which I sent off with the form. This is fair enough, as my doctor said a Med 4 was meant for people who were basically 'crippled' and would also be for people on Disability Living Allowance (that's not me).

I, like probably many others, tend to hide the full extent of the pain from their nearest and dearest, and I am also a 'fighter' and will put up with as lot more pain than I probably should. I also make fun of myself in awkward situations to stop myself from becoming morose.

I have a theory (thought) about why we are still in pain when our blood levels are back to normal and have mentioned this in my last posting. But, like lots of things, it's a personal theory. I will run this past my doctor when I next see her (in a couple of weeks when I'm ready to reduce the steroids again).

I, too, would like to get involved in some sort of self-help/support group.

NB: What is Devil's Claw and how does it help?

Jayne

Hi Jayne

it was my article that mentioned Devils Claw. It was recommended to me by a reflexologist as an anti inflammitory. I've been taking it for over 6 months and to be honest, like many things I'm doing and taking, its very difficult to judge whether they are doing me any good. My PMR is still there and some days I feel really bad, but would I be worse without them.. or better????

See Kate's \"Moved\" article to join self help

Good luck, sounds like you're doing very well

regards Pam :D

Hi everybody

A few weeks ago my sister suggested that I could try a cranial osteopath. This is because her multiply-handicapped son had seemed to experience great relief from his painful back.

So I went along a bit sceptical and so far I have had two treatments. It is very gentle. I always used to love having a deep strong massage but since I've had PMR I haven't wanted to be touched (much!), so this suited me. Anyway, I can't say it's due to the treatment but I do seem to be moving more easily and I'm in slightly less pain. In fact, yesterday evening I managed to jog around the local park. This is a big landmark experience! (':D')

I was so happy I nearly cried.

The rheumatologist at the hospital started to bring me off prednisolone three months ago, and August was very difficult, with very great pain and needing a stick to walk. I started getting the terrible pains in my hips I wrote about earlier. Now I'm on 2.5 mg one day and nothing the next. I've noticed that the morning after a day when I've taken 2.5mg, my pain is actually worse than when I haven't taken anything. In two weeks time I'm going to stop the steroids altogether and see what happens. I think Jayne's theory makes sense. The blood vessels are damaged and the tissues around need to heal as well. I also wonder whether there might be damage to the ligaments caused by PMR or even by prednisolone.(':?')

As for the self-help group idea, there aren't too many replies yet (see the 'moved' posting lower down the discussion list) so keep them coming!

Regards to all

Kate

Hi. I'm Barbara 54 yrs old. I just joined this site and will be back. I have had Polymyalgia Rheumatica since Aug of 06. I'm down to 9mgs of Prednisone and will be going down to 8mgs after 4 wks. I'm having pain and stiffness in my neck and shoulders lately which makes me worry to lower my dose of Prednisone. I guess time will tell.

Hi - I don't know about doctors being confused but they certainly confuse me and by the different reports on this site there are many of us being given different opinions. Was diagnosed in June this year with PmR after 6 weeks of pain ++ and the associated loss of activities. Steroids did make a marked improvement in that I was able to walk and get in and out of bed and chairs etc without so much pain. ESR is now down but I continue to have discomfort -not pain -in various muscle groups and I agree with Jayne's theory about muscles having to heal after the inflammation subsides. However steroids have not improved things as much as i hoped - I am still exhausted after any activity and am no where near back to myself - still cannot return to work. Saw the rheumatologist this week - who on examination thinks some of my joints are still inflamed despite ESR down and because of Raised rheumatoid factors in my blood suggests it is not PMR after all but RA. Also says that by now I should have been able to reduce my steroids to a much lower level than I am on (12.5mg) and still maintain improvement. So it is back to square one and further tests before possible more drugs - meantime I am not to reduce the steroids any further. He also says I am too young for PMR but I know from this site that many of you are younger than me.( I am 56 - but feel 86). I feel guilty when I moan as there are so many more worse diagnoses that I could have been given but I feel very much we are in their hands without any real proof of what is happening within our bodies and I really am concerned that the effects of these drugs could be worse than the effect of the original illness! - mind you I don't want that pain again!! This site is very supportive and I think everyone given the diagnosis should be informed about it as it does help to read how we all have the same anxieties and concerns.

Good wishes to you all - hope you have a good day and not too many challenges today. Gillb

Hi gillb

How right you are the advice we are all receiving from the so called experts seems so varied.

You say that they think you should be on a dose lower than 12.5mg after 3 months. I don't think I was and I was really encouraged to stick at 10mg for months.

I too have found this site great because family and friends just cant understand what it is like. We all seem to be muddling on trying to find some relief where we can.

Kate's idea of a self-help group is a fantastic step forward to try and get us a bit more organised. Great idea Kate. Hope you get a good response.

Hallo, Kate,

Many of your sentiments are mine.

Does anyone else wonder why Prednisolone is universally prescribed for PMR? It only masks the pain and often lands us with other unpleasant symptoms including, as you say, the very same that we complained of in the first place. Has anyone's GP ever come clean and admitted you might be better without it?

I love the idea of printing off some of these posts for doctors to read what PMR is really like. Taking horse to water comes to mind.

BettyE

Your Doctor or Rheumatologist prescribes prednislonone, because it relieves the pain. Unfortunately nothing else, except Methotextrate, seems to work.

They know it does not cure it and they also know there is no known cause or cure for either PMR or GCA. They do the best they can with the tools available.

Whether an individual decides to take the prednisolone is entirely up to the them, they know how much pain they can take and work through and for how long. PMR does not kill you, it just destroys your quality of life and has a mind of its own. Comes when it wants to and goes when it wants to. Hopefully that will change in the future.

Yes, there are side effects, many of them not pleasant, but not everybody experiences them to the same degree and I do not know of anyone who has had all 82 as listed on another website.

Research into cause and cure is taking place, but its patchy and needs funding. There are support groups out there and a new Charity called pmr-gca uk will be launched on the 10 March this year.

visit www.pmr-gca-northeast.org.uk to find out more about pmr.

In the meantime, I hope you have better days.

Your post was some time ago but perhaps you will read this.Did you ever get an answer as to why the hospital doctor wanted to get you off steroids. I have found doctors have a rather ambivalent attitude to this drug and no wonder; it does have so many different effects, some magically good and other dire in different people and at different times in the same people. I have had both experiences. Has anyone done any in depth research? When it works it's marvellous but why only sometimes?

Hi BettyE!

When I first started working in the Health service we used to say \"when in doubt - try steroids\".

The steroids we get for PMR don't cure it, they do have an anti-inflammatory effect but I'm far from sure that that is what they are necessarily doing for us. The clinical picture I went to the doctors with fitted PMR to a T - except I had very LOW blood values for the ESR and CRP which are what are called \"markers\" for inflammation but they are non-specific and the ESR, in particular, may be high just because you have a flu-ey cold. Any disease which ends in \"itis\" is an inflammation of something, e.g. appendicitis is an inflamed appendix, and so on. This means the name for the PMR's relation GCA, giant cell arteritis, represents inflamed arteries. So - in my case, was there any inflammation? Didn't alter the fact that the symptoms all went in a few days on 15mg/day prednisolone and now I can function almost normally as long as I don't overdo it - and I still get painful joints when the weather is about to change!

I suspect that the two camps of doctors are representative of the fact that some have a real understanding of what we are experiencing and some don't. I'd tried to explain how ill I felt and the level of pain I had some of the time for more than 4 years before I finally suggested the possibility of PMR to my GP. The GPs are happy to work on the steroid treatment with me, the consultant I saw just didn't want to listen to my story properly and insisted I was too young for PMR (nice thought but...)

On reflection, I suspect that what I have actually started when I was in my late 20s when I had what appeared to be a viral infection followed by nearly 6 months of severe fatigue which prevented me working for some time - at one point I couldn't even stand for more than 5 minutes! At that time the concept of ME was still very much in its infancy and was called \"yuppy flu\". What I experienced then (and the blood results) ticks enough of the boxes to need serious consideration of ME as a diagnosis. For years I have had to be careful to limit what I do to avoid the fatigue and, on and off, have had joint pain and and stiffness in my back although it was a much more intense flare of these symptoms which occured 5 years ago. I managed to keep going with various physical therapies but I was never totally free of pain until the steroid treatment.

Steriods are not nice - as you know yourself some people have horrid side-effects and they may even develop other life-threatening illnesses from taking them, even without having an accident, needing surgery etc when the dose must be upped to cover the body's needs under those stresses. I think that's why some doctors are so against using them -some doctors have a real problem accepting that sometimes you can't cure something, you can only ameliorate the problem, just like sometimes they will have to accept their patient will die - but they see that as a failure, they were never taught in medical school that death is sometimes inevitable. One of the blogs written by a doctor has had a discussion of that fact recently: that they didn't come face to face with that side of medicine in university, albeit that was 35-ish years ago (in my day!) and things are slowly improving nowadays.

There remains the need for research - but at present the perception is that PMR is not very common. Your grandparents almost certainly had it -oh my rheumatics! - I certainly remember seeing lots of older people who had difficulty getting up from a chair, but everyone EXPECTED to get stiffer as they got older. Our generation is rather different, we expect to carry on as we have always done - heaven knows we need to as the Government raises the pension age! But neither is PMR sexy enough - we're not button-nosed small children who get the \"Ohhh - how sweet, what a shame\" reaction either. But it will represent an increasing problem as we bab