Have I got PMR?

I know two people who developed all the classic symptoms of PMR. Both of them had been put on statins within the previous few months for high blood pressure. Stopping the statins cured their stiffness and pain almost overnight in the way that steroids do. Confusing?!?

Jayeeh

I've been on blood pressure tablets since I was 38 years old and started on statins about 3 years ago. I had to come off of them twice because they caused terrible cramps but the pain was totally different to the PMR. I'm back on statins now, a different one (on the advice of my consultant as my cholesterol levels go to almost 10 when I'm not on them). One does wonder if there's a link but I'm better on the new statin and I was having bad cramps without them so figure I have to bite the bullet and try to stay on them. I've actually felt quite well for several weeks so something must be working. I'm on 12.5mgs Prednisolone at the moment.

Keep well.

Lizzie Ellen

Hi Bob

Poor old you I think perhaps you should change your G. P. I was 57 and really fit got a severe chest infection then I had muscle pains in the tops of my legs gradually went all over. It took a couple of months of different tests X RAys etc. Although my ESr was raised it was only slightly raised.

my GP said that a raised ESR was not necessarily an indicator and put me on 20 mg of steroid which within 2 days I felt normal. He sais that if the steroid did not work then I did not have PMR I have been on them for 18 mondths and am down to 5mg. Have had another chest infection but strangely my PMR has been really good going to get over this and If still ok wull reduce down.

Good luck and perhaps you should insist toi your GP that you go back to Rhemy for another consultantion, you sound classic PMR.

I really feel for you it is bad enough feeling ill and in pain, but even worse when you cannot get a diagnosis.

Regards

Lin da

Hi there Bob sorry to hear your news but Im with Lizzie Ellen paying to see a Rheumatologist was the best thing I did My Doctor was happy to refer me (the first bout I had ) but the waiting list was 3months and at that point I couldnt turn over in bed in the mornings without crying Also although I saw him privately I had my 17 !!!! blood tests on the NHS My Doctor did the referral and I saw him within a week You might not have PMR but you have something that is severly incapacitating you so other things need to be eliminated I wasnt on any other drugs so it certainly wasnt statins that caused Still fingers crossed have normal BP and no cholestral problems but no one knows what seems to cause it but it needs to be made manageable Im on extra paracetamol as well in this cold weather and trying not to increase the steroids and get on an even keel after Xmas Good Luck but dont give up with your Doctor go back

Many thanks to everyone for your replies and kind words which I really appreciate.

Today has been another really bad day for me because my wife and I have our 18 month old grandson Thomas on Fridays and I don't even have the strength in my arms to pick him up for a cuddle which is really hard......... do others have simlar problems?

In answer to some of your points, my chest infection went on for 2 months but it wasn't treated with anything because swine flu was on the rampage and anyone with a cough was banned from visiting their GP. I just carried on doing my sport as normal when I should have taken to my bed which with hindsight I now realise was pretty stupid.

I did pay to see a consultant privately, because the waiting list was something like 3 months, and she has taken a real interest and been excellent but my GP disagreed with her diagnosis and took me off the steroids after a couple of weeks. I thought in the medical profession hierarchy the consultant was king but it appears not and the consultant has her hands tied if the GP says no. The consultant is carrying out other tests but without a conclusive blood test my GP is not going to shift as she appears to have a real downer on taking steroids.

Someone suggested looking for a different GP which is something I am seriously considering after yesterdays consultation. She said several things that contradicted the advice given on this website and used these to argue why I haven't got PMR so I have lost confidence in her ability.

To end on a more positive note, whilst this is getting me down life could be a lot worse. I have a loving family around me, my eldest daughter, who lives in Windsor is getting married this year (don't mention the cost!) and I have two cruises booked so a lot to look forward to.

Thanks again

Bob

Bob

Your experience with untreated chest infection was exactly the same as mine. I had it for ages it was 18 months ago went to emergency a/e who said I did not have infection went back to my doctors week later as still felt awful and he diagnosed me with chest infection.

I also look after my grandaughter and understand completely how upsetting it is not to be able to fully enjoy them.

Good luck with your diagnosis. With steroid although they have there downside you can live a normal life.

Regards

Linda

Hi Bob,

I think you have no alternative but to change your GP! Do you belong to a practice with more than one Doctor, because you can see anyone you wish. Well, I can at my surgery, I have about 14 Doctors to choose from. One of my best friends is a GP and he's been following my progress with interest as he says he can always learn from a specialist consultant. Shame yours doesn't have the same attitude. Steroids must be used with care but, along with a lot of our friends on this site, we simply couldn't function without them to start with. I never abuse them and have already started to reduce the dosage as instructed by my Consultant. I know what you mean about having weak arms. Sometimes I can't even lift a cup, but it doesn't last too long - I really feel for you when you say you can't give your Grandson a cuddle. Change your GP, get back to your Consultant and get yourself sorted out before the wedding and cruises. We're all on your side, good luck!

Lizzie Ellen

PS Don't forget, double cuddles for Thomas when your arms feel better!

Hi Bob,

Just a thought. Did the steroids the Consultant put you on help? And what dose did you start on? My understanding is that if you don't get significant relief from your symptoms within a few days of starting on steroids, then its almost certainly not PMR. Would others agree with this? Maybe this is why you GP is doubting PMR. I felt so much better within 6 hours of starting on 15mg of Prednisolone and although my Consultant then carried out numerous tests, she said that my response to the steroids made her 95% sure it was PMR.

Lizzie Ellen

Yes change your Doctor I was very lucky that when I first had PMR in 2002 I happened to see a Dr in my practice for the first time who was brilliant I hadnt particuarly seen any other Dr before this I was healthy !! Just 2 emergency appointments one for shingles and Millenium Flu Yes my understanding is the Consultant is King !! When I started on 20mg with both bouts within 24 hours I was feeling great we all or most of us !! understand steroids arent to be taken lightly but where would most of us be without them?? Yes definatley have the weak wrist syndrome and keep dropping things even though I feel I am gripping normally I feel very lucky that my husband is great (under pressure at the moment trying to go to work and take care of our horses ) !! Im not happy driving on all this snow and ice Have a weekend in Prague booked for March Off to Spain in May with the flights we transferred from Xmas because of the possiblble BA strike and will be sitting down with some brochures to plan the rest off the year On a lighter note also when I walked to the village the other day thay were short of newspapers so took one I never read and it had a Health horoscope and for me (Aries ) It says if its teeth bones muscles or joints that have been bothering you it should get sorted this year !!!!! and that the weariness that has been making you feel older than your years should lift at the same time !! They MUST mean PMR !! Not something I normally read but I shall be framing this and keeping my fingers crossed !! As I am housebound by the weather I am going to rethink my fitness regime next week and get blood tests and Drs appointment booked to see where I am as I have had to have extra 1mg this week to keep functioning and lots of paracetamols Best wishes to all and hope for no more snow

Hi Lizzie and others

My consultant started me on 15 mg and like you there was a significant improvement within hours but it didn't go completely. I slept much better but was still a bit stiff in the mornings and late in the day (as though they wore off as the day progressed) and every day was different. I am sure I said that the improvement was something like 70-80%. After a week or so I could do everything I did before and even managed a short run. There is a medical paper on the Patient Care website, that I found a couple of days ago, that actually refers to a 70% improvement in 2 weeks as being the benchmark for the improvement expected from steroids in patients with PMR.

My GP said that because I didn't get 100% improvement it proves that it isn't PMR. She also said that the pain in my right wrist and hand, that has started lately, proves it isn't PMR because its unilateral and PMR always affects both sides of the body equally ..... CAN ANYONE DISPUTE THIS?

Have a good one

Bob

Oh Bob, I bet you're wishing your GP could feel the pain !

I don't think that any of us would say we have ever had 100% improvement since taking the steroids, they just make the aches and pain more bearable.

Your experience does sound classic PMR.

My GP has made phone calls to the consultant rheumatologist regarding my dosage, and was guided by him even before I had an appointment with the consultant .

I agree that you should be seen by another GP in your practice and if that's not possible , then change altogether.

Good luck with whatever you decide to do,

hope this weather is not affecting everyone too badly. I'm afraid I'm not so good myself at the moment, but hey, I could wake up tomorrow feeling a lot better, I live in hope !

Best to all,

DD

Yes I have pain in my right wrist only ( I am left handed ) When I had PMR before I was more prone to Bicep pain and that wasnt always equal usuallly worse in left arm I am too polite to say what sort of rubbish I think she is talking !!

Hi again Bob

I believe it's possible for the pain sometimes to start off unilaterally in some cases.....BUT, as it takes hold it then appears to become unilateral. During my flare-ups over the last few years, the pain and stiffness has often reappeared at first in one shoulder and the top of one arm and it has quickly spread to the other side prior to increasing back up on the dose.

It's true that if steroids bring about a dramatic improvement after 2/3 days then PMR is generally diagnosed. However, I remain a little sceptical about this when considering that steroids are also prescribed for a number of other conditions where they also bring dramatic relief, ie Crohns Disease, COPD, Asthma. So they generally appear to bring relief in many other inflammatory conditions. Hopefully, the other tests you say that your consultant is carrying out will rule out such other inflammatory conditions as rheumatoid arthritis and leave PMR as the cuprit. Perhaps you can ring the consultant's secretary and find out when to expect the results of the other tests. Hopefully you'll soon be able to give Thomas all the cuddles he needs!

Mrs O

Hi Bob,

I think we should all come and meet you at your Doctor's surgery and tell her what we know about PMR! A darn sight more than she seems to :x I would agree I had 70% to 80% improvement with steroids, but compared to the agony I'd been in I felt so happy it felt like 110% improvement! My left arm and wrist are very painful at times, often numb and very weak but my right arm and wrist have never been a problem. PMR started in my right shoulder, transferred to the left shoulder about three months later and the only place I've ever had equal pain is in the hips. So I think your Doctor must have got the wrong book off the library shelf when she was studying PMR :!: Do I sound a bit mad at your Doctor? Well I am. I agree you need all the tests to eliminate any other possible illness but my Consultant treated me for PMR whilst these tests were going on. I'm so grateful to her. I can only back what everyone else is saying on this site and wish you all the best.

Lizzie Ellen

Last word on first line, of course should read \"bilateral\" - I was rushing the post as dear hubby was calling that my dinner was ready (spoilt or what!). Little grey cells to blame really!

MrsO