Could I still have Pmr with low esr results?

I agree with most of what you say Eileen. I responded dramatically to pred, but it still turned out I did not have PMR. I think it helped initially but I am so glad that my doctor realised it was not the case and weaned me off. I am back to full health now and no PMR. I was wrongly diagnosed. I certainly was not talking rubbish.

I meant the GP not you. She is talking rubbish saying she can't prescribe pred any more - that is absolutely NOT the case.

However - you could have had a mild attack of pred-responsive PMR. It commonly appears in response to stress and it may be the underlying autoimmune disorder that causes it burnt out very quickly for you. Many experts say that PMR lasts for longer than 6 weeks and encourage a wait of that long before using pred to see if it burns out relatively quickly. There are patients who recover from PMR very quickly - and the idea of the reduction is to find the lowest dose that controls the symptoms: doing that steadily would have had you off pred quite quickly if you had no flares. I know a few who have been off pred in between 1 and 2 years once they reduced slowly enough to avoid steroid withdrawal symptoms.

If PMR disappears quickly there is no way of saying whether it was/was not PMR. PMR is a clinical diagnosis, based on history and symptoms and response to pred. There are no definitive tests - and that is the primary problem.

I think you are quite correct about it being wrong to stop the pred after a week, particularly when it achieved a result. But shazzy has had this for 20 months - this is something that should have been referred long ago, this GP is not doing her job. To claim she can't give pred (when it works so well) when she happily provides pain killers is very poor practice. 

As cat lady demonstrates it is also possible to have more than one autoimmune disorder - and exhibit symptoms of 2 or more. Then the diagnosis should be "cross over syndrome" and you use the medications that provide the best relief. She should be left on the lowest dose of pred that avoids a relapse - allowing the inflammation to return leads to other problems, but it seems some doctors just don't either know or believe this. 

Yes you are right and its good to hear that not everybody has all the side effects. I felt so good when I was taking them i walked normal! I even felt I may be able to go back to work, after being stuck in bed for so long. I could get myself dressed, even put a bra on! Surely she should understand that being unable to do all of those things again is going to make my life so much worse than the possible side effects of the prednisolone. I will fight this I think! Thank you x

I have been so many times over the last year all at the surgery should know how bad it is, i cant even sit down most of the time cos of the hip pain, and instead hold on to the back of the chair. I need a stick too and they can see that. I am on the Wirral. I will definitely make a nuisance of myself now after this advice -thank you x

Good for you! Its your life and your body and you know what is best for you. Believe me, so many of us on these PMR forums have been in a similar position, including myself so you have a lot of sympathy.

Thank you x

One lady found that when she wrote an honest diary of just how badly her life was affected in the form of a letter she handed to her GP he suddenly realised he'd been dismissing it too lightly. Being unable to dress yourself and not being registered disabled you would think might flag up there is something going on here that needs urgent attention.

In the meantime have you tried Bowen therapy? It won't cure PMR but there is probably a lot more going on which it could help a bit with - it kept me upright for 5 years when I couldn't get a doctor to take my complaints seriously. Or a private physio - you obviously haven't been offered THAT by your practice. The inability to sit could be due to trochanteric bursitis - and hip bursitis is very much a part of PMR. The physio would spot that - can't do much about it without cortisone shots but can write to your GP. 

If you go to the PMRGCAUK northeast support site I gave you the link to, it should provide info about support groups - as far as I know there is one in the Manchester area and they may have suggestions of good rheumys locally for PMR. There are certainly excellent ones in Leeds but that is probably a bit far. Sometimes, a single private appointment with a rheumy who knows their stuff can pay for itself - and you get to see them quickly.

Yes I know you are right. My rheumatologist is not good at all. There are two at our local hospital. First one said I had fibro, second one said I didnt I just had arthritis in various places, which is rubbish as I was then getting pain on both sides instantaniously, feet, hips, wrists, elbows, shoulders and sciatica. That was a few years ago, maybe more than 7 actually. My hips and shoulders have been the thing stopping me most  this last two yeats and they were scanned, no bursitis according to the orthopaedic spesh, just a tear and nothing obvious to be causing me so much pain. Last night I woke several times, each time feeling like I had been hit by a bus. The pain was mostly my hip/thigh and my knee, then later on my elbows, so much pain! I end up thrashing all over the bed. I am actually registered disabled now, as of the last two months. Some gp's just dont care enough. One actually glared at me while I stood there sobbing in agony begging for some better pain relief. I had shuffled into her office at the speed of a snail. I really think she thought I was putting it on! For what for goodness sake?!?! I really enjoyed my life before this. I loved being outdoors, walking all over wit my dog, trips out to Wales each weekend, up to my narrowboat every week and walks along the canal, a job I loved so much I used to actally sing in work!  Even used to cheer other people up with my happiness. Why would I WANT to give up that life for one of lying in bed with tramadol and 'friends' on the tv?! 

I will look up the Bowen therapy thank you. ANd yes, it would definitely be beneficial to find a decent rheumatologist. Some people do their initial training and think thats it for their working life! Things change and they dont want to keep up, its so infuriating! Unfortunately I am not iin a position to pay private for anything. Since I have been off work the last ten months my financial status has been at its worst ever and I live alone with two children who are still in education. My part time job has gone to half pay and I just got finished up from my other part time job, so I am struggling managing now taking home at least £300 a month less than I need to pay out. I am now getting PIP and ESA. I havent a clue about benefits as I have always worked, despite having had a bad injury to my spine 22 years ago (apart from the initial 4 years when I was actually housebound with severe sciatica and back and neck pain) but I was with the kids dad then. So finances are pretty tight, well very, so I have to do things through rhe NHS unless I get. Lottery win! Lol

Hi Eileen. You appear so knowledgeable about PMR I wonder if I could ask you a couple of questions?

* when it is said that the condition can last for one to two years (apparently if you are lucky) does that mean with this intensity of pain?

* can you be on an acceptable dose of prednisone (one that is not going to give you the hideous side-effects but be of benefit) and live pain-free? Or is there always some residual pain?

* My doctor has increased my pred dose to 10mg a day. But I can't function normally until mid-morning without pretty intense pain. Is this what happens to all PMR sufferers on pred?

* does the point of pain vary with individuals? Mine is extreme from my skull down my neck into my shoulders and into my right arm, even extending to those fingers. Yesterday it was my left leg that was most painful - and that's where this cycle of pain started in May/June.

I hope you don't mind me bombarding you with questions but feeling very alone in this new ball park.

Thank you, Heather

It sounds to me as if your doctor may not be going about this the right way - unless I'm totally misunderstanding where your questions come from.

When you start on pred for PMR it should be at a dose of 15mg/day, sometimes possibly 20mg if you don't get a good result with 15mg. When you start taking 15mg pred you should get about a 70% improvement in the symptoms - pain and stiffness - within 24-48 hours. If you don't get that dramatic improvement at 15, 20 should be tried. If that doesn't achieve a good result there is a serious question as to whether this really is PMR - other things can resemble it and they don't respond to pred in the same way. 

After about 6 weeks on 15mg you can start to think about reducing the dose. One group of expert doctors from the Bristol rheumatology department say to drop by 2.5mg, to 12.5mg, and stay there for 6 weeks and then drop to 10mg and stay on 10mg for a year. The aim is to find the lowest dose that manages the symptoms at an acceptable level.

Once you start on pred you should NOT have the sort of intensity of pain you sound to have. It is unlikely you will be totally pain-free but you should be able to manage a reasonably normal life - unless you are very unlucky. I won't deny there are some people who struggle far more than others, but the majority don't have intense pain. Most of us still suffer with the fatigue - the pred won't help that a lot.

The pred does not cure the PMR: PMR is the name given to the symptoms caused by an underlying autoimmune disorder that causes your immune system to attack your body, causing inflammation and, as a result, swelling and so probably a reduced blood supply to the muscles which is what leads to the pain when you exercise because the muscles can't get a good supply of oxygen. Your muscles just can't tolerate exercise and tire far quicker than they should and don't repair themselves afterwards as fast as they should.

The pred is there to help you manage the symptoms - together with you adapting your lifestyle to help: avoiding activities that cause pain afterwards, resting, avoiding stress and so on. If you do that you can have a reasonable quality of life with manageable pain levels - but you are NOT going to be back to 100% fitness and ability for some time. In some people it burns out in a couple of years, sometimes less but that is unusual, for many it lasts maybe 4 to 6 years. I have had PMR for 10 years. It was mild but wasn't diagnosed or treated for 5 years and then it got far far worse and the pain was excruciating - it still took 6 months to be put on pred. After 5 years I am down to a dose of 4mg, am fairly much pain-free and able to do most things within reason. But I had a bad year a couple of years ago - and learnt a lot about PMR from bitter personal experience.

Did you start on 15mg? You say "my doctor has increased the dose to 10mg.." - no, you must control the inflammation first with a relatively high dose and only then can you reduce towards 10mg - and the slower the better but I'll explain that more when I know more about your situation. 

Are you taking the whole 10mg as early in the morning as is reasonable? Don't wait until you struggle out of bed and get breakfast: take a drink and a yoghurt or sandwich to bed with you and take the pred, all of it at once, as soon as you wake, and then settle down for another hour or two in bed. If the dose is high enough you should feel reasonable after a couple of hours. If you don't - the dose needs to be higher for the moment. Some people find the morning goes better if they use an electric blanket to warm them up BEFORE getting out of bed. Then a warm shower will get the circulation going enough to allow you to stretch those sore muscles. Once you start to move it is a spiral - you feel better, you move a bit more, you feel a bit better. 

Have you ever seen a physiotherapist? Or have you ever considered Bowen therapy? Some of what you describe sounds suspiciously as if you may have myofascial pain syndrome as well. This causes knots to form in the shoulder muscles and also low back and along the side of the spine. They make the muscles go into spasm and can cause referred pain into the neck and arms if it is in the shoulders and into the legs if it is low back. These respond better to local cortisone injections but Bowen therapy or mobilisation by a physio who knows what they are doing - but ordinary physio won't help and must be approached with care so a knowledgeable physio is essential.

To get a lot more info without me writing a post that is pages long - this is already plenty for you to take in at the moment - follow this link:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

which will take you to another post on this site. In it are links to the northeast of England support site which has reliable and accurate info about PMR and its associated illness GCA. There are stories there form other patients, and newsletter with advice - all sorts of things to help your learn more about this illness. There is a link to another forum, much less formal than this with a load of people who will advise, sympathise, suggest - and generally cheer you up. We've all been where you are.

The final link is to a paper by the Bristol rheumatologists which is aimed at GPs to help them diagnose and manage PMR better, many of them struggle, know you need pred but not how to use it best. Your GP may be willing to read it and take its advice. The doses I mentioned are their recommendations - but it seems to work well and are low enough to avoid the worst side effects.

But the side effects of pred are not so bad when you consider pred used properly should give you your life back. We have been there, got the t-shirts, this forum is here for you to ask questions - I probably haven't answered your questions quite how you expected. That's because I can't give 100% answers and can't give better ones than I have without knowing a lot more of your history, where you started, what else has been done and so on.

Eileen, what about sweating profusely when eating or drinking coffee? It literally drips from my forehead, I could actually catch it in a bowl. I have night sweats too, but I know thats quite common anyway, but I dont know anyone that sweats this bad when eating or drinking. Also when I am doing the dishes it just drips from my head, and body, my clothes are so saturated I could wring them out!

I know people who have sweated that badly - without drinking something hot! MrsK on this forum used to have drenching sweats around her neck and into her hair and would sit with a towel to catch the drips!

Some experts feel that PMR and GCA are at opposite ends of a spectrum and I do wonder whether maybe patients who have these spiking sweats may be nearer to the GCA end than the simple PMR end - who knows.

Thank you. I dont really understand blood results but have been told over the last few years that i have a positive ANA and apparently when they have taken routine bloods during a and e visits there has been a 'flash' up saying there are antibodies?  I also had a CA125 marker but doc told me not to worry about it, as it could relate to a gynae problem, but really I would like to find out what that gynae problem is! Crazy docs get me so frustrated! X

Is the doctor certain that what you have is PMR? It is very unusual for patients with PMR to have a positive ANA. PMR and late onset RA can present in a similar manner. There is no test that reliably distinguishes between them since ANA can be either positive or negative in RA - but it is thought to almost never be positive in PMR.

Um, I think if I had a CA125 marker I would like a bit more investigation, preferably by a specialist. It can relate to several things - but I'd want the nastier ones ruled out.

No, no certain diagnosis. I definitely responded well to prednisolone but RA has been suggested over the years

It is possible to have both at the same time of course! Some of us do end up pulling VERY short straws! There is some thought that the patients who do better on pred plus methotrexate or azathioprine may be the ones who have LORA that is so similar to PMR that you can't tell the difference. 

Its all so confusing! I have just received a letter from the GP surgery telling me that I have been invited to be one of the patients they are offering a personal care plan to where you see a chosen doctor each time on a regular basis to discuss your health and needs. Sounds good so I will ring to see when that starts. I fell asleep a while ago and woke with the most tremendous pain in my hip that I was lying on. I tried to move but the pain made me cry out, felt like someone was driving a screwdriver through the hip. The kids came running to see what was up and I just couldnt move. Every movement however slight, was excrutiating. It got easier after a while to get up and once I had stood up it was fine! Back lying down now though as my whole body feels weak. I hate moaning and just wanna go and get on with things  but I just cant!