Newly diagnosed

Hi, My GP told me I "Probably" have PMR, it had no cure just a long term treatment with serious consequences he gave me this website address and told me to read up on it for myself. Ive had pain for months, have to use my toes to pick up things in the morning after i have literally crawled out of bed, takes forever to get dressed, not every day but mostly, all blood tests have been ok except ESR which has slowly climbed to the still low level of 36 and i am so tired and feeling guilty for not getting things done. I don't know if i should seek another opinion or ask for a specialist referral or if I am just grasping at straws that i have something fixable. whats the general route to diagnosis? I am 53 and work with horses, really need to get on with my life.

[piglette]

doubtfullee, I am so sorry you have had such a rotten time. Has your GP given you any steroids? If it is PMR they can have a literally magical effect on the pain in a very short time. If they don't work your GP needs to look at some other diagnosis. You can take steroids for a week and then just stop them with no problem, which should give you enough time to see if they have any effect. If you do have PMR I can really sympathise with your problems. I could hardly move just before I was diagnosed, it was even agony to scratch my nose. I then took the steroids and in fifteen hours twenty five minutes a miracle happened.

[DorsetLady PMRGCAuk volunteer]

Hi there,

What a strange attitude from your GP! Is he intending to do anything to find out if his "probable" diagnosis is a fact. If he thinks it's PMR then he should be prescribing Pred to find out. As piglette's response says, a few days on it will give the answer. Until that happens, and he's sure either way, then it's difficult to give you any further detailed advice.

I think you need to see him again, you do describe symptoms which could well be PMR, albeit that your ESR figures are not high, nor are you in the "normal" age range, but then lots of people's aren't.

You certainly can't go on as you are, things will only get worse without treatment. As he says there is no cure for PMR, but there certainly is a means to control it.

Hope you get things sorted soon.

[baldbill in reply to DorsetLady]

Yeah! The AMA's method of controlling PMR is with Prednisone, a nasty demonic drug. My GP never told me there was a danger of diabetes because it raises your blood sugar. BP, causes Cataracts, bone loss to name a few. It's a catch 22, you are dammed if you don't and dammed if you do. I tapered off Pred over 3months and have been off of it for about a month, have no plans to take it again. So I do not know what I am going to do.

[DorsetLady PMRGCAuk volunteer in reply to baldbill]

Hi baldbill - you obviously had bad experiences with Pred as have lots of people. But as someone who had her sight saved in one eye, having already lost the sight in the other through undiagnosed GCA, I have to acknowledge and defend its good side. Although at high amounts -80 mg a day I must admit the side effects are pretty spectacular, and I wouldn't want to repeat them!

However, like it or not, it does its job!

[HeronNS in reply to baldbill]

baldbill - As a wise person has said on one of these forums, prednisone is your friend. It may be a dangerous acquaintance. It needs to be used with care and caution. If you can safely get your daily dose down to about 7 mg your risk of side effects goes down and by 5, so I am told, the risks diminish to close to zero. We still need to be proactive about caring for our health. Diet, to avoid the tendency towards diabetes and weight gain, appropriate amount of exercise, calcium and Vitamin D to counteract bone loss, etc. I've come to the conclusion that this disease is a life changing event, but not a death sentence. I certainly planned to be off pred within five months, but now I know that isn't going to happen. But I'll help myself get off eventually!

[jinasc]

Your GP said 'you probably have PMR' - well go to the websites listed below and download and take them to your GP.

Then tell him you want him to do his job for which he is well paid. If he won't, change your GP. Your GP should be happy I am not one of his patients.

I would have asked how come he was supposed to be a medic and treat people and if s/he did not know them refer me on to Seconday (Consultant) level. S/he could also have used Patient.co.uk which nearly every medical professional in the UK uses and so do patients.

British Society of Rheumatologists Diagnosis and Treatment of PMR.

NHS - same as above

PMR&GCA UK North East Support

PMR GCA UK.

Patients.co.uk

[Celtic PMRGCAuk volunteer]

Doubtfullee, the "general route to diagnosis" when a GP suspects PMR is not to scare you with comments like "it had no cure just a long term treatment with serious consequences" (how unprofessional), but, as others have said, to start you on a trial dose of 15mg of the steroid, Prednisolone. If your symptoms improve by at least 70% within a few days, or sometimes within hours, then that can usually be taken as confirmation of diagnosis. If the GP is not sufficiently confident in his diagnosis, he should refer you to a rheumatologist for his opinion.

Yes, he is correct in saying that it is "a long term treatment", but he is totally wrong in commenting that the treatment has "serious consequences". Quite the opposite, in fact, as leaving uncontrolled inflammation coursing through your body can itself have more serious consequences, including letting the linked condition, GCA, in through the back door which untreated can lead to loss of eyesight.

Your GP isn't all bad.....at least he pointed you in the direction of this forum and website! I hope reading all the replies here and the 'related posts' and 'pinned posts' on the right hand side will prove helpful, and that you get some treatment in place soon to get you on the road to recovery.

[PamOakes]

Hi!

I agree with what others have said. If he thinks it's pmr then a few days of steroids would have given you both an idea & yourself some relief!

I was diagnosed 5 months ago aged 54, like you I had horses & found it all too much, shifting bales & mucking out plus heavy wheelbarrows all became too much & even though the steroids took away the pain & stiffness the fatigue & muscle intolerance/weakness remains. I no longer have horses sadly but walk my dogs twice a day for the fresh air & benefits of a little exercise plus working part time. I truly hope you get the help you need & some answers soon, goodness knows you need them. We are all here if you need us & I wish you a speedy diagnosis & treatment

Pam

[pollyg263]

what a bad response from your doc and a scary one too , yes pmr is a very painfull ailment. but once on steroids it is manageable. and pain free, its just that you will be on them for a good while, so don't disspare, just read some of the input,all your pmr friends on this forum say it will leave your system. if you follow there advise

good luck

[Charlie1boy]

Very sorry to read about your experience, but good, at least, that you have been referred to this forum. I was diagnosed with PMR at the end of last year, and have found the forum to be brilliant!

I've nothing really to add to what has already been written, but, at the time of diagnosis, my GP told me that the diagnosis is actually with the treatment. In other words, if the steroids do reduce the pain so dramatically, as they did in my case, then you probably have PMR.

Also, it is definitely not the end of the road! Once you and your body have adjusted to the steroids, and the effects of PMR, then life can be ok. You will just have to remember to pacè yourself, and have plenty of rest. You may have to learn this the hard way!

Best of luck, and I do hope you are out of pain by now.

[PMRpro Ambassador]

I can only echo the others comments - what a prat! His job is not to scare you but to help you manage PMR with the lowest dose of pred that does the job - and that is the aim of the game. You start at a dose that is pretty likely to work for everyone (15mg is usual), get the existing symptoms under control and then reduce very slowly in small steps to find the lowest dose that gives the same result.

Yes pred CAN have serious implications but so can untreated PMR - I had it from 51 for 5 years with no treatment because I too was "too young" and "no raised markers" (ESR reached the dizzy heights of 7 when I could barely get out of bed or walk). I put on weight, I was depressed, I developed atrial fibrillation due to damage caused by the autoimmune part of the disorder, my lifestyle was severely limited so I was very inactive and had poor balance - major risk factors for osteoporosis. These are all things they attribute to pred - with pred (and a lot of hard work) I now have lost a lot of weight, am active again and feel well and not depressed. In terms of PMR I take pred - otherwise I'd have been on antidepressants, painkillers (paracetamol and ibuprofen didn't do a lot except take the edge off the pain and they have some lovely side-effects too) and heaven knows what else. And they'd be nagging me to exercise and lose weight.

The only person who should feel guilt is that GP who is failing you left right and centre.

Take this paper to him and tell him to educate himself:

rcpe.ac.uk/sites/default/fi...

It is aimed at him and even helps him make a more informed decision than "It's probably PMR". The age-range for PMR and GCA has been extended to "over 50" so that isn't a problem and you have a raised ESR - plus the right symptoms. Ask him what happened to "clinical skills" - it was part of their training as I remember. But then, I'm old!

If he won't help - find another or demand a referral to a specialist.

[Lyn_seaside]

My symptoms were classic PMR (stiffness and pain all over the place, couldn't pick anything up, hips, arms, shoulders really painful etc.) but my bloods weren't so my GP decided to try Pred on the basis that if it works, it's PMR and can be treated accordingly, if not then they'd try something else. Did 3 days on 15, and then down to 10 for a month and so on, slowly tapering. Within six hours of the first dose, I had no pain at all and have had none since, I'm now down to 6mg. I run a very busy business and have not found any dip in energy levels or any problems functioning normally - as soon as the Pred kicked in, I was back to normal. I do Pilates, walk, swim, cycle, and do a full day's work. I would strongly suggest asking your GP if this is worth trying. Hope this is helpful and reassuring.

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Thanks to everyone who responded, having taken the max safe dose of painkillers today, just to get by, then i know for sure i have to do something so I am phoning the surgery tomorrow to make another appointment. I have a feeling after that i may be seeking a new GP! Living out in the sticks limits my options though and maybe i just need to learn patience. Steroids seems less of a demon when i read everyones experiences, Hugely appreciate the positivity i have found from you all, heartfelt thanks from a less doubtful me.