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Have I got PMR?

Hi All

This is a really great site and has a lot of useful stuff for a newbie like me so many thanks to all the contributors and fellow sufferers.

I have lots of question I want answers to but the main one is have I got PMR? because my consultant and GP seem to disagree on the diagnosis or the treatment and I am feeling like piggy in the middle right now. I have outlined the progress of my complaint below and would be very interested in hearing how these fit the experience of others.

Background. I am 62 years old, been fit and active all my life and up to 4 months ago regularly ran 10 miles, went to the gym, played competitive bowls etc. At end July/Aug 09 I developed a severe chest infection and cough that lasted for most of August and September. In mid Sept the first signs of my current complaint started with a strained feeling in the inside of my left leg from the hip joint to the knee. This was so painful that I couldn't lift my leg off the floor and sleep was difficult. I hobbled around for a bit and then a week or so later my right leg started to play up and both legs felt as though I had just run a marathon. I saw my GP who said it was muscular and put me on a course of Ibuprufen. A week or so later my right shoulder started to hurt really bad and then another week later my left shoulder. The most recent development is my right wrist and hand which are so painful in the morning that I struggle to butter a slice of toast. I ache all day but nighttimes are especially bad and the aches and pains in my shoulders/arms and hands keep me awake. My legs though are still achy but much improved and whilst I still can't run I can walk 2 or 3 miles without too much problem which I don't understand given the state of the rest of me. In the morning especially I am like an old man and so weak I would loose in a fight with my 18 month old grandson.

My GP and consultant disagree with the diagnosis because my blood tests do not confirm it and my GP took me off the 15mg dose of steroids the consultant prescribed after a couple of weeks even though I was much improved. The past 3 weeks, since I stopped taking the steroids, have been really bad and my quality of life just above zero so I am seeing my GP later this week to sort it out because I can't go on like this.

Apologies for rambling on like this but any advice would be most welcomed.

Many thanks

Bob

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  • Guest

    Hi Bob,

    I wish I could help but being new to this myself, all I can offer is some sympathy.

    Your story is very much the same as mine. I started with a chest infection, I am in pain, sleepless, waiting for a bloodtest, medicating myself with Ibruprofen and scouring this site for answers.

    I just wanted to say hello and hope someone else can help you.

    All the best,

    Tilly

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  • MrsO

    Hello Bob and welcome. I'm sorry to hear of the trouble you are having in getting a proper diagnosis, and can so sympathise with how you are feeling as I was in the same position for a year before diagnosis.

    Firstly, your pain areas do sound classic of PMR, although there are many other arthritic conditions with similar symptoms. For instance, have you had a blood test for Rheumatoid Arthritis? I ask this because when I went for a private second opinion I was told that if I didn't have rheumatoid arthritis then I had PMR!

    Although it is usual with PMR for CRP and/or ESR blood tests to show raised inflammatory markers and this is then how a firm diagnosis of PMR is usually made and steroids prescribed, there are some sufferers who are diagnosed with PMR even though they have normal blood test results.

    Secondly, if the steroids relieve the pain within a few days then that is usually a sign that the right diagnosis of PMR has been made.

    However, if this is PMR, then I am surprised that you are able to walk 2/3 miles \&quot;without too much problem\&quot;. It does sound as though the severe chest infection may have triggered some inflammatory condition and you need to be referred back to a rheumatologist to get to the bottom of it. Sorry not to be able to be more helpful but hope this has been able to answer some of your questions. Good luck and do get back to us and let us know how you get on.

    MrsO

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  • mrs k

    Bob

    Yes, it could be PMR and yes you could still be able to walk 2 - 3 miles, as some of the men in our support group have been able to do this as well as having PMR. And yes you can have PMR without a raised ESR rate.

    However you did need a diagnosis. Visit www.pmr-gca-northeast.org.uk and read the Guidelines issued by the British Society of Rheumatology in June 2009. These guidelines are also to be found of the NHS website.

    Check also to see if there is a support group near you.

    I hope this is all helpful to you. Keep on coming back to this site as there is a wealth of information out there from patients.

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  • Lizzie Ellen

    Hi Bob,

    Sorry to hear you feel so rotten. When I first started having symptoms I went to the Doctor and she ran loads of blood tests. My ESR never was and never has been raised. My CRP was very slightly raised but not enough for the Doctor to consider PMR or to put me on steroids. I could barely move, in a lot of pain and at my wits end, so I telephoned a Rheumatologist privately and she said it was not entirely unusual for the bloods to contradict the symptoms, she put me on 15mg Prednisolone and said if there was a marked improvement then I had PMR and if Prednisolone made no difference then it wasn't. I felt better in hours. My CRP did eventually catch up with me, which again, my Consultant said wasn't that unusual. My advice would be to get back to your Consultant ASAP. They're dealing with our type of illness on a daily basis, GPs are in general medicine and cannot be expert at everything. Do hope you get sorted out soon - don't be afraid to contact your Consultant for an emergency appointment, mine's a brick and always fits me in if I need to see her. Good luck.

    Lizzie Ellen

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  • Bob the Builder

    Many thanks for all your replies which have been extremely helpful and lead me to believe that it most likely is PMR. I am seeing the Dr on Thursday (if the snow stops falling) but armed with a lot more knowledge on the subject than I had previously so thanks again.

    Tilly - I hope you too get sorted out quickly. As others have said on this site the steroids are like magic and relieve the symptoms very quickly. I noticed a difference in less than 24 hours so there is hope.

    Bob

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  • Mrs G

    Hi there as the others say it does sound like PMR symptoms The first time I had PMR My ESR was not raised and even my CRP wasnt that high but my Doctor was convinced I had PMR but the Practice said I couldnt have steroids until I saw a Rheumatologist I saw one privately as I was in agony He was very thorough with my History and did 17 blood tests !!!! and confirmed PMR I responded so well to 20mg and was off them completely in 2 years ( I was 54 on diagnosis ) and very active I have horses went to Aerobics and Gym and managed to do most of this with the help of steroids in this time I managed to live a normal life until 60 till it came back This time I had raised ESR and CRP and my steroid reduction certainly hasnt gone so well and I have had recent wrist pain and more muscle pulls and general aches I have tried at least 4 times to get below 5mg What I am saying really in one person the illness has shown 2 different variations so we are all different I dont think blood tests alone show everything my Doctor always says you know how you feel and she has been wonderful The other thing is dont push yourself too hard I feel I might have helped my PMR return by overdoing it I have land with my horses and was doing loads of physical work just before it returned I notice now if I overdo it my aches are worse I think you did a thread on another post about this happenning to active people ?? Well a Practice Nurse did say to me once that she thought I was young to have it at 54 but a Rheumatologist had said to her it seemed as if the younger people it attacked were very active ( I dont think that was a scientific study just an observation ) Good luck with your blood tests but insist on a Consultants opinion if you arent happy As far as I am concerned life is very precious and an active life is more precious ( I keep records of everything that happens and blood tests etc as we all have to help ourselves also Cant wait for spring to feel warm again !!

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  • Guest

    Thanks Bob.

    Being snowed in has been good for me as it has forced me to rest, sleep in when I have a bad night (like every night!) and take stock.

    I have had time to read more posts on this site and get more information about PMR.

    More heavy snow is forcast here tonight, light snow each day until Sunday when we have heavy snow again. With minus 6 degrees tonight, it won't be pleasant out there.

    Good luck for Thursday. I hope the snow doesn't stop you getting there.

    Tilly

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  • Bob the Builder

    Thanks Tilly and Mrs G

    Mrs G your experience and advice is really helpful because I know that at the first sign of an improvement I will be wanting to run marathons again which is likely to do me more harm than good in the long run. Being active is my life so I just don't know how I am going to cope with a forced level of inactivity but hopefully I will still be able to participate at a reduced level if I am sensible about it (that will be a first!).

    The snow down here is deep, thick and even which is very rare in this part of the country where we only see snow every 10-15 years so its a real novelty. I can't get off my drive so no work today which is a bonus. Hope everyone else is coping ok.

    Regards

    Bob

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  • Lizzie Ellen

    Hi Bob,

    I know how you feel about taking life at a slower pace! Until PMR decided to pay me a visit I was very active. Travelling a lot, going to the gym at least three times a week, walking every day and generally whizzing around my day to day life. I've had to slow down considerably but decided that if that's what PMR wants, then that's what I'll give it, in the hope that it will go away quicker. So far, so good. Already reducing the Pred and that's going well. Have a bit more energy now and not getting the awful fatigue that plagued me to start with. I'm 8 months into this now and seeing a little improvement every day. I was going to start swimming again this week, but the snow says otherwise. Can't even get down the drive at the moment, but hope that swimming will be a start back to fitness. I sympathize with your snow situation, same here in Basingstoke although we often get it when you don't. Hope your football team sorts itself out, although as a Saints supporter I shouldn't be showing any concern should I :lol: . I'm trying to look on my enforced slowing down as a way back to good health, trying to turn a negative into a positive. Hope it works for you. Good Luck.

    Lizzie Ellen

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  • Lizzie Ellen

    You have to be a bit mad to support Saints but as my Dad and my brother insisted on it when I was young its sort of stuck with me. Still basking in the glory of winning the cup all those years ago (but haven't done too muc basking lately!!) Keep well.

    Lizzie Ellen

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  • Bob the Builder

    Hi All

    Thanks for your support but I saw my GP today who said that my blood levels are not raised so I DON'T HAVE PMR. She wouldn't listen when I tried diplomatically to point out that 20% of cases don't have raised levels according to the Patient UK website and insists she knows best. Anyway, I now feel so much better knowing that all these aches and pains in my legs, shoulders, arms and hand and sleepless nights tossing and turning are no more than a figment of my imagination.

    Anyone got a spare gun!

    Bob

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  • Guest

    Oh Bob, I am so sorry.

    It must be devastating for you to be dismissed like that. I think you are entitled to a second opinion.

    From reading this forum, I know that it isn't that easy to dignose PMR but surely your doc has given you a reason for your symptoms?

    Please ask for a referral to a consultant.

    I am sure that the other more experienced and better informed folks will come along soon with their sage advice.

    I do have a gun but I am not going to lend it to you! Well not yet! LOL.

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  • Lizzie Ellen

    Poor you Bob. Its exactly what happened to me. Get to a Rheumatology Consultant, quickly! I forked out privately but its was the best investment I've ever made. After just one initial consultation she transferred me to the NHS. I find it very frustrating when just a 5 day course of Prednisolone will confirm whether you have PMR or not. Do not dispair, get an expert opinion. Wish you the very best of luck Bob.

    Lizzie Ellen

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  • MrsO

    Hi Bob and so sorry to hear of your experience with your GP today -how can she be so arrogant and dismissive of your problem and send you home continuing to suffer without any help or advice? At the very least she should have suggested further tests or referred you back to the consultant. If I were you I would ring the consultant's secretary and, as Lizzie Ellen has said, get a private consultation with him if necessary.

    It does seem that your prolonged chest infection was the trigger in your case for all your pain. Did you have antibiotics at the time of the chest infection? I ask because I was once talking to a man who had suddenly experienced all the same painful symptoms as me...his GP treated it as a virus/infection and put him on a week's course of antibiotics together with 8 weeks supply of steroids and he completely recovered. Unfortunately, as you have experienced, it seems not all GPs are so clued up and helpful.

    I do hope you achieve some satisfaction on the 'phone tomorrow - it's your body and they have a duty and are being paid to look after it! Good luck and let us know how you get on even if it's only to let off steam - lots of us have been in a similar boat and we all understand.

    MrsO

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  • jayeeh

    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

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  • Lizzie Ellen

    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

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  • Linda Williams

    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

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  • Mrs G

    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

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  • Bob the Builder

    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

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