PMR or not...blood tests clear?

Hello sue-bubbles

Yes, there is a bit of advice.

Go to www.pmr-gca-northeast.org.uk (Under Useful Information) or the NHS site or the British Society of Rhematologists site (ues the search engines on the latter two sites) and look for the BSR Guidelines on for PMR issued June 2009.

Read and download.

Book another appointment with your GP after one week on the anti-inflammatories, they won't touch PMR pain at all. Explain that she is not experiencing your pain and you cannot go on any longer without a diagnosis. Sometimes you just have to push. Its your body and you know how you feel. Too many times over the last few years have we been asked this question when people are suffering, I sometimes despair.

Also ask your GP to do a full spectrum blood test and in particular the Vit D test.

If you cannot get a referral to a Rheumatologist within two weeks of asking for new patients (guidelines for seeing any consultant specialist in my hospital area) then if you can afford it, seek out a Rheumatologist who specialises in PMR & GCA and go private.

I know this latter is not a route that anyone can take, it costs about £100 normally and should not be necessary.

Come back and let us all know how you get on and I am sure someone else will be along with a bit more advice.

Good Luck and stay strong.

Hello

Sorry to hear you are in such pain I was one of those who had completely normal ( whatever that is !!) bloods with the first bout of PMR and the only slight elevation was in CRP My GP was convinced it was PMR but the senior Partner in the practice was against anyone having steroids with normal bloods and as the referral to a Rheumatologist was 3months I went private as my pain did seem to be escalating and I spent a lot of time not knowing what to do sit or stand and on waking up !!!!! Tears every day couldnt even reach for my tea my husband always brings me I was 54 I had first thought it was just overdoing it Gym Aerobics etc but it was a chance reading of an article in a mag that made me realise it was PMR

There are lots of people who dont have raised bloods and some who seem to have quite high levels ( for me ) and still reduce steroids and are OK For me to be on good form I have to be around 5 on both if its anywhere in the teens I will definately have some aches But a cold ,sore throat etc will send my bloods right up

With my 2nd bout of PMR I did have raised ESR and CRP in 20s and 30s and my Dr said I should have come earlier !!

We are all different and cant be treated the same and Mrs K is right get all your facts and get back to the Dr ( I cant really cope with Ibrofen makes me feel far worse than steroids ) and if you cant get a quick trip to a Rheumatologist on the NHS go private if you can ( It was the best £140 I ever spent )

Keep records of all aches pains ,blood results and ( hopefully ) when you get steroids doesage etc Its very useful as I think with all the pain you tend to forget things at a later date

Best wishes and hope you get some help soon

Mrs G

Hi Sue and others

Sorry to hear of your suffering.

You unfortunately join a long list of sufferers on this site, of which I am one, who have all the symptoms of PMR but normal blood levels and this makes it very difficult for the medical professionals to diagnose PMR with any certainty. Who knows we may even have a completely different illness but with similar symptoms to PMR and this is why any advice given can only be based on individual experiences as there isn’t a one size fits all solution.

For reasons that I have stated on my earlier posts, I am trying to get through this extremely painful condition without steroids and I intend to post something in September on my experience entitled “a year without steroids”. In the meantime I would like to offer you some encouragement. 6 months ago I was showing signs of depression and was a grown man reduced to tears by my condition and the effect it was having on my life but that is certainly no longer the case. I now understand the condition (thanks to others on this site) and have learnt to live with the pain through taking a positive mental attitude and simply not giving in to it. I will not be running marathons any time soon but I am leading an active life that I wouldn’t have thought possible 6 months ago.

I also better understand the medication. I was on steroids for a short time and know how good it feels to be ‘normal’ again but everyone on this site is in a battle to reduce the dose so still have to manage the pain. As Mrs K said anti-inflammatories are not an effective treatment for PMR but in my experience they do give a small benefit (perhaps only 10%) and are the reason I have been able to manage without steroids for so long. I take 400mg Ibuprufen 2 or 3 times a day, which is half the prescribed dose by my GP, and this is sufficient for me to cope with my PMR. The pain and stiffness isn’t going to kill me so I just accept it and get on with my life.

It may not seem like it right now but there is light at the end of the tunnel and you will improve so just keep positive.

Best Regards

Bob

Bob the Builder

As you may not know Bob, we run two support groups up North and meet quarterly in different locations. We have been running one support group for nearly three years and one for two years.

We have men in both support groups and it is amazing to those of who attend those groups, how much difference in the experience of PMR and side effects there are between male and female.

It seems to the group (and this includes the men) that they are able to cope better, get down off their steroids quickly, still be able to play golf, mind in some cases, 9 holes instead of 18 for the first year and we have decided, in our own little way, that it must be the genetic make up difference between the sexes.

As you know, it is mainly women who get PMR. Out of 100 people, 97 will be women and 3 men. And GCA seems to be even more rare in men.I only know one to date and he has both.

Sometimes we laugh and say, well this in one occasion when we would not mind being men.

Good Luck and hope to hear you are clear in September.

Thank you so much for your replies, your support means a great deal to me. I have downloaded all the info from the link Mrs K and have that on hand if and when needed, thank you.

Well, I have collected my prescription today - I have been given Naproxen 500mg twice a day for a month. The possible side effects of this are pretty horrifying and you wonder why they worry so much about presribing steroids?!? However, I think we learn to put that bit of the leaflet to the back of our minds dont we and trust that we have been given something that will do us some good.

Welldone Bob on managing without the steroids, your story does give me hope that it can be done....if absolutely necessary!

Whilst at the chemist I bought a supply of various vitamins that I gather are good for this type of pain in addition to the side effects of my Tamoxifen - magnesium, calcium, vits K & D. However, I think I will hold fire on those for a little while as I need to judge just what effect the Naproxen will have.

I will be sure to let you know how things go!

Sue

Hi sue-bubbles!

Only just in on this one as I've been at a conference in a hotel overlooking Lake Maggiore - as I said earlier, hard life but someone has to do it!

Your description of how you are is absolutely identical to how I was last spring. My bloods are also normal - even on the low side. It is not uncommon for younger patients to demonstrate this pattern and my PMR started (at least identifiably for this time) when I was in my early fifties like you. I remained with no diagnosis for nealy 5 years until I was in a state where I could hardly function. There was no way I could have done the work you do - I'm a freelance translator, just have to sit in front of a computer! But lifting my dictionaries was almost impossible!

My usual GP did the didn't know bit and referred me to a rheumatologist who did listen the first time but wasn't convinced about the PMR suggestion (made by me after extensive research). He did a load of x-rays and other blood tests and I went back after 6 weeks - this time I didn't see him immediately, just the minion (a GP with special interest in arthritis) but was then ignored by both of them when I reported that just 6 hours after taking my first dose of the steroids he'd condescended to try forst time the stiffness had improved immeasureably, and the pain was 70% improved after 2 days. He wanted to make a much more complex and obscure diagnosis although all the tests he'd done were negative.

I subsequently saw another GP in the practice - I was in tears after the lack of promised letter to me from the consultant - and she was quite happy to accept a PMR diagnosis. I live most of the time in Italy and my GP here agrees as well. The response to steroids is characteristic: they do help many other rheumatic things but the speed of response suggests PMR and many doctors regard it as a confirmation of a suspected diagnosis.

I'm a bit short of time just now but there are a load of other posts from me on other threads that are relevant - in your place I would go to another GP in your practice armed with the info MrsK has told you to download and if they won't listen and at least give you a 2 week trial of 15mg per day prednisolone demand a referral and hope you get a sympathetic consultant. There is no guarantee however. Two weeks of that dose is perfectly reasonable and used for many other things such as chest infections and asthma on a regular basis without anyone having a fit about \"using steroids\".

Yes, steroids do have horrid side-effects. But so does ibuprofen - doesn't do your gut any good - and it has only a minimal effect in PMR and not everyone gets all the side-effects of steroids. With regard to doing PMR without steroids - in some cases it can be done as Bob the builder is saying. I did it too for nearly 5 years as I had no other choice so I do know what I'm talking about. I have spent hundreds of pounds on physio and the other physical therapies that made it almost livable with and I spent hours in the gym doing aqua aerobics, Pilates and yoga. NOTHING, and I mean nothing, took away the constant pain and the indignity of crawling up the stairs on hands and knees and not being able to have a bath as I couldn't get in or out. I'm lucky, I have a husband who earned a good wage so I didn't have to go out to work and we could afford the gym fees and the other costs. I have sat in the kitchen in so much pain I could do nothing but cry with frustration at not being able to peel the veg, I couldn't stand to iron and holding it was also agony. I couldn't walk more than a few hundred yards. With steroids I now have a normal life - not 100% perfect but I can function like a human being. And sorry - but quality of life and dignity is what it is all about. I still can't walk long distances but I ski and do everything else I need to without dreading touching something because of pain. Pain that did NOT respond to any painkillers.

anyway - good luck and don't be put off by

Thank you Eileen for sharing your experiences with me - the point about your levels being almost too low was particularly interesting as that is how the doc worded things to me...like it was a good thing!

I have taken my two pills today and feeling decidedly woozy :shock: Still going up the stairs on all fours though lol!

My worst pain at this moment is down one leg...it actually feels like it is broken and I really shouldnt be walking on it as it will snap in half at any minute! I know the reason for this....the stiffness in my lower back makes me limp and I strain the leg - I did far too much hobbling around at work this week (through gritted teeth) so I must take it easier next week. Then I have a fortnight off - this will be a testing time....give the pills a chance to work (or not) and then when I return to work - see what happens when I start striding around the store again!

Unlike most of you it seems, most of my aches and pains are in the hips and this flipping leg. My shoulders are mostly involved when I wake in the morning - I feel quite paralised and turning over in bed, let alone getting out of it are a bit of a struggle to say the least. But that does ease off once I am up and about and is just stiff without too much discomfort after an hour or so. I can lift my arms up without the pain you describe and I can work with my hands...which is a good thing as I am an avid crafter - take that away from me and I would be doomed! Whether this indicates that what I am suffering is not PMR I dont know....time will tell I guess.

Wishing you all a good weekend, as pain free and comfy as possible!

Sue

Hello Sue

I have been reading your posts over the last couple of days and really do sympathise with you for the pain you are suffering especially after all that you have already been through over the last couple of years.

I have little to add to the excellent advice you have already been given except that I experience what sounds like the same pain you refer to down one leg. Although I was diagnosed with PMR and GCA over 3 years ago (commenced on 40mgs Prednisolone, now down to alternate days of 1 and 1.5mg and everything crossed), in my case this particular leg pain is caused by sciatica where my sciatic nerve is being compressed by an injury to my spine where one of the lowest vertebrae has slipped forwards. In the case of PMR the leg pain is usually bilateral along with the arm and shoulder pain. Also, I would add that with untreated PMR, it is fairly unusual for the shoulder pain to disappear as quickly as within an hour of getting up. Any spinal problem can in itself cause referred pain down one or both legs and down the arms.

With regard to you \"feeling hot a lot of the time\", two of my close friends are on Tamoxifen like you and they also complain of this change in their body temperature.

I do sincerely hope that you are not eventually diagnosed with PMR but, if so, then keep coming back to this site as all our shared experiences can bo so helpful and comforting. In any event do keep in touch and let us know how you get on.

Very best wishes,

MrsO

Hi MrsO and sue-bubbles!

Although my stiffness was pretty much all over, I did have one side that was worse than the other in places - if that makes sense. The Bowen practitioner I went to was of the opinion that the muscle stiffness in the hip area and lower back was causing some restriction of the sciatic nerve and leadingt to the leg pain. But I, too, sometimes felt as if I couldn't put any weight on my leg. I couldn't lift my arms above my shoulders properly but did do it for most of the time I had the symptoms prior to diagnosis and put it down to the back problems I have had a lot of my life but which have improvd no end on the steroids. It was last spring when it got really bad that I finally would have complained about my shoulders being worse than the rest of me. The hip pain was deep in the joint and was worse after sitting or walking far and also woke me at night with a sort of grinding aching which kept me awake for ages. I am absolutely sure that was due to the problems with the lower back muscles. It's all gone now!!! Thank goodness!

bye for now

EileenH

Hi Sue,

A couple of things - when i took Naproxen it made me VERY constipated. Make sure your diet is good; I took Ortisan fruit cubes (and still do) to keep things moving. Also, don't take any of these pills on an empty stomach.

Because of your cancer history I think getting to a rheumatologist is imperitive. They will run many blood tests and will be checking for this as a matter of course I think. Lots of these pmr symptons mimic other things including rheumatoid arthritis, lupus and cancer.

One friend of mine was diagnosed with pmr and took high doses of steroids for nearly a year to try and combat the pain only to find it was a disc problem in her spine. The sypmtons had fooled her gp and a rhuemy!

We all want and need an acurate diagnoses... then we know where we're headed. At 51 I was diagnosed with pmr by the rheumy, he later changed that to \"represents pmr\" and now admits to not being able to name it! But, it is going, albeit very slowly. Just some sort of inflammatory arthritis...

The anti-infam I use now is diclofenic and that certainly helps.

Best of luck.

ps I have two elderly men friends with gca! More common in Devon maybe?

Hi Eileen and anyone else suffering back pain

Whilst on the subject of back pain whether PMR-related or not and sometimes it's so difficult to tell the difference :? A few weeks ago we went on a coach trip to Canterbury and my back pain was so bad within 10 minutes of alighting from the coach that walking was impossible and apart from the Cathedral most of the time was spent in an hotel restaurant! For the next few days I really struggled, couldn't stand for more than a few minutes, was in tears with frustration and pain and thought I was back to square one. Not knowing how I was going to be able to stand and do the Sunday roast, and really not wanting to up the steroids after getting over 4 years down the line of PMR and finally at such a low dose (1.5/1mg) I resorted to a very supportive pantie girdle - the relief was immediate so I wore it for the next couple of days.

I'm so glad you are now recovered from your spinal pain Eileen but this is just a thought for you for the future and for anyone else who it might help.....well perhaps not the men looking in as there's a different sort of back support for you :lol:

A happy and comfortable weekend everyone.

MrsO

A happy and pain-free weekend to all the ladies (wearing a pantie-girdle or not) and all the men who may not feel so inclined

Ooops - don't know how that last line got in as I thought I'd deleted it when I was changing my chain of thoughts. Gremlins maybe :roll: MrsO

Hi!

I've just been looking back over this thread and there are a few points that seem to need clarification.

One is that polymyalgia rheumatica is not a definitive diagnosis. It merely means \"many painful muscles\" and is the term to describe a syndrome, a state you are in. There are no definite features to nail the diagnosis down. The blood tests are totally non-specific. The ESR can be raised if you have a cold, due to other totally unrelated things going on and merely shows there is some form of inflammatory process in your body. They are not diagnostic if high, they do not exclude it if they are normal or low. A diagnosis of PMR is made on the basis of a clinical picture - the symptoms of stiffness, pain and a few other things of which 3 or more should be present to suggest the idea in the first place and then there are some other diagnoses which must be ruled out.

It is about the only syndrome with these symptoms with which we are all so familiar that will respond within hours to a trial of prednisolone. It is the speed of response that is so characteristic. Other forms of arthritis will also improve on steroids and they are used for many forms - but only the PMR syndrome will show an improvement in pain and/or stiffness within 24 to 48 hours. In addition, they improve with a dose of 15-20mg. If a higher dose is needed or it takes more than a few days to achieve a 70% improvement, then the diagnosis of PMR must be in question and something else should be looked for. No-one should be \"on steroids for PMR\" and still have similar levels of pain after a couple of months. For a rheumatologist to be \"fooled\" as has been described shows a lack of basic knowledge about the disease and the diagnostic guidelines which are on the pmr-gca northeast support group website for download for anyone who is not sure.

It is an autoimmune disease though how the effects are mediated are not yet known - but like all such diseases there is a wide spectrum of presentation and you cannot say this patient has PMR but this one doesn't, it must be something else, just because one has general stiffness, joint pain and normal bloods and the other has elevated bloods, weight loss and low grade fever and can't lift their arms above shoulder level - both could well respond to steroids as I have described. It is a diagnosis that depends on clinical skills - and can't be read from a lab report.

EileenH

Thanks for that Eileen it makes it very clear Wouldnt it be great if we all had the same symptoms !!!!

I think the bad knees and hips etc must me catching ! I went to our local City for a few thing yesterday ,walked a lot and yeasterday evening we went Horse Racing and were sat in picnic chairs and they are never that comfortable !! This morning my hip feels uncomfortable and then travels to the inside of my knee Im sure that will go

Hoping to start 6.5 tomorrow plannning my own reduction programme now and my Dr seems happy with that

Best wishes to all

Mrs G

Hello all, I am still reading your posts, but have felt like a fraud to post myself as my diagnosis looks like its definitely shifting away from PMR. But I thought I would update you on where I am at, as you were so kind to reply to my initial post and very helpful with your information.

I believe at my last post I had been given Naproxen, and as predicted this did not touch my pain - in fact my pain in my hip and bum has become more severe as each day passes and I am now unable to walk without a great deal of pain all of the time- luckily (?) I am on two weeks holiday from work...or it would be sick leave I think!

Last Tuesday I saw a different doctor (my regular one couldnt fit me in), and because my pain was heightened it was easier for him to pin point where the problems lie, and his diagnosis for me is sacroiliitis. Certainly on googling the subject, some of my symptoms do fit that condition. He prescribed Tramodol which I was to take instead of the cocodamol. Well, apart from a fuzzy head on the first day or two, this too hasnt touched the pain - I am so puzzled that such strong drugs are not helping?

My next appointment is scheduled for next Thursday, but as things have become so severe since I last saw him I am going to ring up on Monday to see if I can see him sooner. I dont know what to ask for though...a friend suggested a cortisone injection - I wonder if any of you have any opinions about that? I believe the doc has referred me to a rheumy, but it will be some time before an appointment comes through.

To be honest I am at the end of my tether with this pain, and I know I probably dont belong here, but I just know you will understand where I am coming from.

Thank you for listening!

Sue