Welcome to the forums. Please sign in or register

  1. Discussion forums
  2. Conditions P
  3. Polymyalgia Rheumatica and GCA

Could it be Polymyalgia?

  1. Hello Lesley. I am into my fourth year with PMR and it's a beast to diagnose and treat. It is a disease where all others have to be discounted, rather than one positive result giving a definite answer. The first rheumatologist I saw declared I was too young at 53+ to have PMR as it could only start at 55! To that point my GP had put me on 40mg prednisilone, but the rheumatologist changed my presrciption to amitryptilline and ibuprofen. After three weeks of struggling I had to admit defeat and pleaded to be allowed to take predisilone again. The relief was tremendous - within hours. This has happened on another occasion too, and also when I took echinacea (a herb to improve immunity - it blocks the action of steroids).

    Yes, the side effects of steroids are awful, but they keep the symptoms at bay and may allow you to function normally again. The side effects of naproxyn are also nasty - I also struggle with psoriasis and the itching on my feet at night nearly has me crying - but it could be due to naproxyn.

    I also advise contacting PMRGCAuk - lovely Jean supplies a wonderful information pack for a small fee.

    Best of luck and don't give up!

  2. welcome i know you dont want to be here but it sounds as if you may have found yourself at the right place ,first and foremost read up about gca and pmr on the other website knowledge is power ,secondly go back to your gp you need blood tests done esr or crp to establish inflammartory markers are raised but if not raised it does not mean you have gca or pmr .this is established by a very positive result to taking high doses of

    steroids .also he needs to eliminate other conditions which can be done by blood tests dont be fobbed off with the old 50 chestnut you need action now .come back to us with your questions and we will answer them dont give up gps often misdiagnose pmr and gca at first just keep going carolk

  3. Mugwump - I'm surprised you haven't been considered as a case of psoriatric arthritis. Very similar to PMR and although I'd NEVER had any sign of psoriasis the rheumy I saw was adamant it wasn't PMR despite being pretty textbook symptoms (plus some GCA ones that have been ignored) and I responded to 15mg pred withing 6 hours! I was also "too young" and have no abnormal blood results except a liver marker which triggered a "drinker" panic on the part of a middle-eastern consultant until I had a ultrasound scan. (He also thought I'd had a TIA despite having NO indicators at all except high blood pressure and that was ignored and never investigated. I now have atrial fibrillation and it is obvious from the tests done here in Italy that I have had HBP for some time since there is some thickening of the walls of the heart.

    But you are so right - PMR is a diagnosis of exclusion and neither GPs nor rheumys seem to be aware of that!

  4. Mugwump

    Like Eileen, I'm surprised psoriatic arthritis hasn't been considered as a possible diagnosis. A colleague of my husband's recently became quite ill with similar sounding pain to that of PMR but when my hubby mentioned she had a nasty itchy rash on her head as well, I immediately thought of psoriatic arthritis, simply because one of the questions a rheumy put to me when I first became ill was whether I'd ever had psoriasis. She was eventually diagnosed with psoriatic arthritis and put on low dose steroids among other things. She's had a tough time after being hospitalised but is also in a full time teaching job so has a fair amount of stress to cope with. Happily being in the middle of the school holidays at present she is suddenly feeling much better. Food for thought for you perhaps?

  5. Hello everyone and thanks for your thoughtful replies. Before steroid treatment I did have high CPR results. My GP dismissed PSA as I don't have any deformed or fat fingers. But that same GP was adamant that there was no link between PMR and GCA....... looking back I believe I could have had PSA for a very long time - I thought the tenderness on my inner ankles was due to playing lots of hockey at school, but I think that should have healed after 40 years!

    Does anyone know what the differences in treatment are? I am on 5mg prednisilone at the mo - was on 4mg but my experiment with echinacea destroyed that. I ache less when on Naproxyn, but can;t stand the itching and peeling skin. Currently waiting for some light therapy.

    thanks again.

  6. Well - what a performance to get signed in! The page isn't downloading properly and all it would offer is the professional log in or something.

    Anyway - the main difference between treatment of plain and simple PMR and psoriatric arthritis is monitoring of the joints for joint damage and use of other stuff like DMARDs to reduce the longterm damage. Initially it would be pred and painkillers which is what you are on - but it is the other bit that is the important bit. PMR is basically the same as RA - except for the joint damage. Those of us that have just PMR only have to worry about developing GCA as we are at a higher risk of that, at least 1 in 6 go on to have a degree of GCA at some time. If you have psoriasis that is the primary risk factor for developing the associated arthritis - so should have been the FIRST diagnosis your GP should have considered.

    Have you seen a rheumy? I have this thing about GPs who think they know more than they do - GCA and PMR are not linked, eh? What rheumatology textbook was HE reading. Or, as usual, did he sleep through his rheumatology lectures?

    And basically - there isn't a lot of alternative medicine you can use safely alongside pred, as you have found. But manuka honey works well though and is safe!

    The Mayo clinic has good info - and I'm sure it mentions other painkillers besides Naproxyn and there must be something that isn't as itchy surely?

    Time for a demand for a rheumy (your right) and some x-rays and possibly MRIs - especially if you have ankle problems. If your GP is an idiot - demand to see another. That's your right too.

    Do let us know how you get on,

    Eileen

  7. i have had problems signing in but today its ok totally agree with eileen you need further investigations good luck carolk

  8. Hello again Mugwump

    Does anyone know what the differences in treatment are?

    I have spoken to my husband's colleague who is on medication for Psoriatic Arthritis. She takes 10mg of Prednisolone daily and 12.5 or 15mgs of Methotrexate weekly (she wasn't sure which one and not near her pills at the time), plus Folic Acid. She has been prescribed various creams for her itchy skin and the one that works the best for her is Coal Tar cream but she said it can sting a bit and being a brownish colour can stain clothing. However, another greasy cream that didn't have this problem didn't work as well either. In the very early days she took Tramadol for her pain. She is under a rheumatologist and perhaps if you asked to be referred you would get a definitive diagnosis one way or the other. All the best and do let us know how you get on.

  9. Hello MrsO

    Thanks so much for this information. I have seen two rheumatologists, but despite having followed the propsed treatment, I feel I am going backwards.

    I will certainly ask to be referred again.

    Thanks everyone.

    Mugwump

  10. Hi everyone,

    I am the original poster of the thread and just wanted to update.

    I have not been back to the doctor since I was diagnosed with 'nerve pain' and given Amytriptiline.

    For the last few weeks I have been having worsening pain which I now know is definitely joint pain - it has spread from left elbow and both shoulders, into left hip, both elbows and now my knees. All my joints are cracking and popping loudly and even my husband can hear the awful grating in my neck and my knees....I sound like a one man band as I go up and down the stairs! But seriously, I was just about at my wits end as the pain is severe during the day and wakens me at night. I have had it for over two months now and I am just so weary of it, and so worried what it could be.

    However, I went In for my three yearly CS on Monday, and could hardly get up on the examining couch I was so stiff and sore. Womans health/smears etc are dealt with by the Nurse Practitioners in our large practice (15 GP's) and when the NP saw my discomfort she asked me what was wrong. It turns out she has a real interest in womens health, and has been involved in HRT trials and research for many years. She informed me that my symptoms all point to fluctuating estrogen, and possible thyroid involvement. She told me a load of stuff about estrogen and cartilage, dry mucosa etc, the details of which I can't remember now but which made so much sense when she explained it - even down to the foul taste and tingling skin I have experienced on and off for months which are both known side effects of estrogen surge as the ovaries go a bit haywire. A small percentage of women are very receptive to estrogen fluctuations which involve cartilage, which mainly manifest as abnormally severe joint pain/menopausal arthritis but it is not an 'obvious' symptom of perimenopause.

    I asked why the GP waved away my questions about this all being hormonal, and she just raised her eyebrows when I told her which male GP it was, and told me to make another appointment as soon as possible with a specific GP (who must be more knowledgeable about womens health.) Going in tomorrow to see her.

    So, perhaps this is the way forward for me and it is not PMR. I don't know what is worse actually, as the pain of this is unbearable, and there is no immediate 'cure' (I can't do HRT as I have a heart condition, but maybe I can do estrogen cream, or phytoestrogen/soy.) It could last for a long time I guess until I come out the other side !

    Anyway this has turned into a whole different thread/topic - but thank you all for your help and advice on this forum, and feel free to remove my question if you feel it is no longer relevent to the PMR forum......however, perhaps it will help another woman who comes here because she thinks that severe pain like this must be more than just 'hormones' and it must be something like Polymyalgia...

    Lesley.

  11. Lesley: Hey - no - don't disappear now! You can't leave us in suspense because this is relevant to the age group affected by PMR. If your problem does turn out to be hormonal then the more info we have here the better as PMR is a diagnosis of exclusion. All other possibilities need to be ruled out and then you can say, very probably PMR.

    But we need to have some idea of what the next stages are for you and how they go about it. Then, when there are people for whom the PMR diagnosis doesn't work, they will have some idea where to look and what to ask about. You've found out how unhelpful GPs can be - believe me, you aren't the only one amongst us who has had that problem.

    Very intrigued by the taste bit - I have an almost permanent horrible taste in my mouth too. It's worst in the mornings but there most of the time. Can't remember how long I've had it though.

    Eileen

  12. Eileen....of course I will hang around and let you all know what happens! I guess I am so used to other medical forums where if you go 'off topic' or start to discuss other illnesses, they boot you out! But of course - as you say - this is NOT off topic - and thank you so much for explaining above (way better than I could) that my case could be relevant to others.

    Going in to see the GP tonight at 5.30 so will update later on.

  13. Your first symptoms alone reminded me of me. To me, being a Fibromyalgia sufferer for some 13 years, I would lean more towards your problems being that. Especially the pain in the upper shoulder as that is classic.

  14. PS. About the foul taste. I had it for about two months at the beginning of the year, and it was one of the worst things I have ever dealt with. I had a permanent, chemical, awful taste in my mouth - almost like poison. I described it as like when you get an uncoated pill stuck on the back of your tongue when you are trying to swallow it and you get that awful bitter vile taste that wont go away for ages (apparently prednisolone is awful if one gets stuck) I remember when I was pregnant having a metallic for the first few months and that is a known side effect, and KNOWN to be hormonal. I went to my GP with it - I did feel a bit stupid saying I have a vile taste in my mouth, but it was really bothering me, as it affected everything I ate or drank. My GP just said 'that's not a symptom of anything...maybe sinusitis, or a dental problem'. I knew it was not hygiene related, and I know sinus drip (vile in a different way) but this felt almost like poison in my mouth. Estrogen! It just seems to make sense. I've been doing a bit of googling, and apparently the ovaries do have a last surge of frantic activity as they start to pack in and dump loads of hormones into the bloodstream. Seems to make sense to me!

    lesley

  15. Linda - did you know if you google 34 menopause symptoms, they are nearly all the same as FM.

    and, lots of 'menopause joint pain' diagrams are exactly the same as the picture of FM tender points. Do you think it is connected? Are you menopausal, and did your symptoms get worse with meno?

    Thanks for your comment, and I will be discussing FM along with PMR and low estrogen with the GP.

  16. http://www.34-menopause-symptoms.com/joint-pain.htm

  17. Hi Lesley,

    I am not menopausal, I got over that a long time ago when I had a hysterectomy done. I never really noticed any difference at the time though. I know what you mean about symptoms being the same so I can see where you are coming from. I just wanted to throw something into the mix to help you get to the bottom of things. I really do hope you find some way to ease the pain. My fibromyalgia is at the chronic stage so I am in constant pain. Even trying to type send pain through my hands, wrists, shoulders, neck and upper back. So you may have to excuse me for any typos along the way. I will pop back from time to time to keep up to date(as often as I can and to see how you are doing.

    Lin

  18. Lesley - I don't know if you ever visited the other forum which is linked in the pinned bit at the top of this forum (the northeast one). If you did you may have noticed that if we chucked everybody off who went off topic there wouldn't be many active members left. It's perhaps more obvious over there, but many of us feel these are support forums for people who can't get to a proper physical group - and they tend to only meet once a month or even every 2 months anyway. It's a long time to be on your own in between. So there we have a laugh, are slightly loony and even discuss the gardening! Or our pets. Or tell bad jokes. :[

    Whether you have PMR proper (so to speak) or fibro or a hormonal mess - strictly speaking PMR should be referred to as polymyalgic syndrome. PMR isn't the disease, it is the symptoms of something underlying the pain and the cause of your discomfort. So even if you have a hormonal problem - you are still suffering from polymyalgic syndrome in the form of painful muscles, polymyalgia rheumatica is just fancy med-speak for lots of painful muscles.

    So, personally, I don't care if you have dodgy hormones, fibromyalgia, CFS or anything else. If it gives you the same gyp my PMR is giving me, whether pred does it for you or not, there is almost bound to be something we have in common. And you may have found a way of coping with it that I can benefit from. So come on in and let's have a glass of something together and enjoy a chat. biggrin

    Add to that the fact that increasing numbers of experts are coming round to the idea that all these ailments are just positions on a long spectrum of autoimmune problems. The main difference is that the autoimmune disease affects different cells in the immune system and they go mad and start to attack your own body. Your symptoms reflect which cells are doing the damage and which body tissue they are destroying.

    I said somewhere else, at the start I did all the research - and my symptoms overlapped both PMR and fibromyalgia. Officially, I don't have quite enough trigger points to qualify for fibro but I'm not far off. Some rheumys talk about a generalised connective tissue disease - has something in common with most of the individual ones. They don't know much about any of them, that's why it often takes ages to get a diagnosis of any sort and why they don't have a treatment for many that works reliably. Most of them appear in older women - or we are simply classfied as pre, post or peri-menopausal and therefore silly middle-aged women. But as we become more significant members of the working population as the retirement age rises, we will get more attention and so will our illnesses.

    Linda and Lesley - do stick with us! The more the merrier :D

    EileenH

  19. Thank you Eileen! Sadly, it's a wee bit early (even for me!) for a glass of something...but I am clinking my tea cup at you...

    Had an interesting visit with the GP last night. I really feel I might be finally getting somewhere. First thing she said after I explained everything again was ' First things first. What are you doing for the pain'. I honestly could have hugged her - for the first time I felt like someone genuinely believed me. We discussed the fact that the pain does not seem to be inflammatory (no heat, redness, swelling) and range of movement is still normal albeit it hurts like hell. The pain I describe is not indicative of a truly rheumatic disorder, neither is the short time it takes for the initial pain and stiffness to wear off when I wake up. Also, my inflammatory markers were 'in normal range' last blood test. So, thinking along the lines that it could be hormonal, she is ordering a lot of blood tests - full panel for thyroid and hormones, ANA, FSH, cortisol, adrenal something or other and something about white cell count, she is also looking to discount both anemia, and too *much* iron, and lastly another ESR.

    I stopped the Naproxen - even though it did help - because it was giving me unbearable heartburn and constipation on top of everything else, and the last GP gave me Diclofenac which does absolutely nothing for the pain. The only thing that gives me any relief funnily enough is plain old paracetamol. However, I got some co-dydramol from this GP soI will try it. Back next Thursday for my results and another chat.

    I can't describe how wonderful it is to finally come away from a GP without feeling like they have me marked as a neurotic hypochondriac. My GP practice is pretty big, and I on the few times I have been in (I have a cardiac condition but other than that I am not in a lot) I have just always sort of stuck with the same two or three doctors, and have never seen this female doctor before. She was just what I hoped she would be and I will be sticking with her!!

  20. That is such good news! I'm so pleased you have at least one human bean in your practice! Is she youngish? I found our young women were much more approachable and well-informed - I don't know if it is improved communication training or merely I was lucky. Most of them didn't mind getting behind either - so you knew you would get a fair hearing. One seemed to want you out of the door before she'd written the prescription - but she accepted the PMR concept on the basis of response to pred whereas the rheumy wouldn't listen.

    "I can't describe how wonderful it is to finally come away from a GP without feeling like they have me marked as a neurotic hypochondriac."

    You don't need to - I know exactly what you mean and although I HAVE met non-empathetic women gynaecologists rolleyes women GPs do seem to be a bit better even if the younger ones have this irritating habit of going off on materntiy leave just as you need them! Continuity of care my foot frown

    She seems to have ordered most of what is useful - maybe a vit D level might have been interesting? That is exactly what should be done in PMR syndrome - the question is what is causing it, but to make a decision about that you need to look at everything that causes this set of symptoms. Some are banal, some are not and to tell someone with these symptoms to go away because it is all in the mind or "your age" is very naughty. One of them one day will be the patient with the "not nice" cause and you will have missed it.

    I'm off to an international meeting tomorrow for a week - so I hope by the time I get back you have at least a few answers to something. Not that that stops me checking in regularly! The fact you say paracetamol does help the pain suggests it may not be plain bog standard PMR - most of us find there aren't any painkillers that do a lot and paracetamol isn't an anti-inflammatory. I found ibuprofen did cut the worst of the tendonitis pain - but only the worst, at a highish dose and that isn't good for you anyway. Funny how GPs won't give a trial of pred but they will hand out pretty foul NSAIDs like sweeties over an extended period despite the effect they can have on stomachs - one friend had a major gastric bleed after 3 days of ibuprofen!

    Good luck on Thursday

    Eileen

Reply to this discussion

Advertisements

Disclaimer: Patient.co.uk has no control over the content of any external links. Inclusion does not imply endorsement by Patient.co.uk.

Discussion Forums' Terms & Conditions