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Polymyalgia Rheumatica

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katie.k.
katie.k.

My husband was diagnosed with PMR about 4 years ago. For months he complained of pains in his shoulders and arms and was generally miserable - very unlike him as he is usually a very happy soul. He was still managing to swim 20 lengths each morning after having struggled down the stairs, but was wiped out for the rest of the day. I finally managed to persuade him to see his GP .and a blood test was performed. He then received a phonecall from her at 08.00 hrs the following morning to say that his ESR levels were sky high and that he had PMR. He then commenced 45mgs Prednisolone and the improvement was almost instant. By that evening he was back to his usual sunny self! He was also put on bone-building medication to counteract the side effects of the steriods (although I don't think he probably took them on a regular basis!).

Over the next couple of years, his ESR was checked on a regular basis, and as it gradually dropped, the steriods were decreased. Until recently, he was managing without but has recently had a slight relapse, and is now taking 1-2 mgs in the hope that this is sufficient to deal with it. I think he probably needs to increase them as he's obviously in pain at times but is reluctant to pile on the weight again. His GP has not suggested an appointment with a rheumatologist. I think they only do this if there is any indication of Temporal Arteritis - an inflammation of the temporal artery - if not treated this can cause blindness - as it causes pressure on the optic nerve. The two conditions sometimes go hand in hand so if an individual with PMR experiences severe headaches they must seek medical help immediately. Again this is treated by large doses of steriods.

I work in a Sheltered Housing complex and three of my 45 residents have PMR - a couple of them for many years. With all three of them they initially had the severe symptoms for around two years or so, followed by

a long spell of being completely free of it. They all have had minor short-term relapses occasionally, and these generally seem to be mostly in the winter months.

Katie

3 likes, 18 replies

18 Replies

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  • tina-uk_cwall
    tina-uk_cwall katie.k.

    Posted

    Hello Katie,

    I'm 53 years old and I thought in very good health although about 1 1/2 stone over weight, but I did Zumba twice a week walked the dog and ran without any trouble our 2 holiday cottages ( imagine changeover day, it was hell, but I did it no problem).

    Then at the begining of September last year I woke up with such a pain in my neck that sort of got a bit better throughout the day but got worse again come the evening and on waking. Over the week the pain then spread to my shoulder blades and shoulder joints, then in week 2 spread to my hips, inner thighs and bottom then to my knees. By the end of the month I couldn't sleep, raise my arms, sit, walk, I was in so much pain and stiff. I went to the Dr's and she organised a blood test that reveiled inflammation, she told me to up my pain killers although I'd told her they didn't work. She then ordered further tests to be performed, ESR, CRP etc but because the surgery was so understaffed I'd have to wait 6 weeks before they could be done so went private. £400.00! The results came back with all the tail tail signs of polymyalgia but my Dr said she had no idea what could be wrong with me! But I insisted that if she didn't know what was wrong I wanted a refurral to a consultant. I saw the Consultant in December and after an in depth consultation he diagnosed Polymyalgia and I was put on 15mg of Prednisolone.Needless to say I changed surgeries and I am now with a brilliant surgery that take very good care of me.

    Within 4 hours of my first dose of medication I was walking up the stairs unaided. Over the weeks and months I got back to my normal self although I have never been completely pain free (always had the odd twinge especially in my shoulders and hips but it's always been just that the odd twinge).

    I have always suffered quite badly from cold sores and now that I'm on this medication I have at least 1 monthly but I try and keep them undercontrol with cream and sometimes when they are very persistant tablets from the Dr and it always seems to be when my body is trying to fight off another medical problem that temporalily the twinges get worse but they always die down when the colds going away or the cold sore is just past that flare up stage.

    As like most patients I am being weined down the dosage levels although I was for 6 months kept on 10mg. 2 weeks ago after being on 9mg for 6 weeks i'm now on 8mg and for the first week was fine. I've now got a pain on my right side of my neck and shoulder blade. Obviously I don't want to up my dosage again but maybe I'll have to should it not improve, so presently I'm just keeping an eye on it and if I think things are not as they should be I'll book a quick appointment with my Dr and she may advise me to go back to 9mg. I also take Alendronic acid weekly and omeprazole daily. I also take, Vit C, Vit D, B complex, Iron, Magnesium and Calcium only at the RDA levels.

    I count myself as lucky because I have not as yet shown any symptems of GCA, and I hope I don't. Also because I'm younger than most sufferers I think I can fight it off better and I think this must be a terrible condition to get when older. But we must remember that we will all get better eventually. Look after yourselves and I hope all sufferers get well soon. Tina

  • tuningup
    tuningup katie.k.

    Posted

    Hi katie...i was diagnosed with poly 4 weeks ago and dr started me on 20 prendisne..before diagnosis i was in so much pain i was using a walker and thinking very seriously about getting a wheelchair..my pain is better now but my right hip feels like its going to buckle or break..im dragging my right leg alone to avoid pressure but my pain is too much at times and i had to get the walker out for certain times..i get so tired so easy..ive gone from insomnia to lazy bones..i feel like i sould b on a higher dose of prendisone but i dont have a appt with rheumo dr til jan 15... i hope i can make it that long..i never heard of this disease until i was told i had it but ive been in serious pain for years?am i expecting too much to be pain frèe or will this never happen..any advice will be helpful..i hope ur husband is better..have a good day
  • tina-uk_cwall
    tina-uk_cwall katie.k.

    Posted

    Hello tuningup, I'm sorry to hear you are in so much pain, I've just come off another thread were members are talking about that very subject. Have you thought that your prednisone is masking all of your PMR pain but that this terrible pain you speak of is a different pain from a different condition that prednisone does not treat therefore you still have it? Also some patients are never totally pain free whilst others are. 

    Also, I found that my PMR pain is not the same pain as say twisting your ankle or stumping your toe, and so the difference of pain helps me to distinguish between say a flare up or the pain I get from doing too much house work. These are just thoughts. christina 

  • christine58469
    christine58469 katie.k.

    Posted

    Dear Katie

    Just discoverd your site and so glad i did i was in tears when i started reading all the posts and wonder if you could give me your opinion whether you think i'm suffering from pr I'm a 53 year old woman and like christina about a stone 1and 1/2 overweight. Two years ago i was a waitress working 9 hour shifts smiling all day.I went to the doctor one day with a very sore shoulder was told it was a frozen shoulder was given some meds and it settled down. Then this happend again last January so of course thinking she'll give me some tablets i'll get better in a week and get back to work but oooh no my life has turned into an endless hell of being passed between doctors, hospital consultents, back specialists and physios. My doctor told me this time it was'nt a frozen shoulder but something to do with my back as i told her i was having severe pain in the muscle of my right fore arm, don't get me wrong i do have back pain and the muscles in back legs were painfull so of course i believed her. Since then i've had scan after scan have been to see a back specialist who after waiting 6 months to see has just gave me the all clear yesterday. I was gobsmacked because i was still in pain and thought i was back to square one until i hit on your site. The reason i'm asking your opinion is in december last year the pains i have in my right  arm started to affect my left shoulder and arm but 100 worse. I take gabapentin, zapain, and just recently naproxen but nothing helps the pain. Sometimes i can't sleep and that's after taking so many tablets that would knock a horse out but the light bulb moment came when i read the words pain much worse in the morning.Every morning when i open my eyes i try not to scream the pain is so intense, does'nt mater if i try to shake it off it happens.I feel as if I've been hit by a bus in the morning with the muscles in both arms painfull until i get out of bed. I have an appoitment with my doctor this month to discuss my scan result so i'm going to mention pr and ask for a blood test. This is my last hope. Thanks christine

    • tina-uk_cwall
      tina-uk_cwall christine58469

      Posted

      Hello Christine, if you are worried that you may have PMR, have you looked up the symtoms etc on this patient site or the nhs site. The symtoms they describe are what you should be experiencing or thereabouts. PMR is an auto immune condition whereby the immune system attacks the large joints and muscles because they think there is something wrong. This causes inflammation and in turn the inflamation causes excruciating pain. My symtoms began when one morning I simply woke up with such a pain in my right side of my neck, over the next four weeks the pain simply got worse and worse and had spread to my shoulders, hips, bottom, thighs, rear of knees. By three months I was in so much pain that I was almost a cripple. I went to see a rheumatologist and he diagnosed PMR, the following morning I took the dose of prednisone that he had prescribed and within 4 hours I was skipping up the stairs and almost all the pain had gone. This condition cannot be cured and is controlled with steriods, called prednisone. Luckily the condition is not terminal and eventually the condition will burn itself out. It may take two, three, four or even ten years but for the whole of the time we are stuck on these horrible drugs albeit at each stage of the burn out a lower dose of prednisone. Ask your Dr to give you a complete blood test including liver test and if the tests reveal inflamation that helps diagnosis however, not all patients have high inflammatory markers in the blood. This condition to degree is age related but I got it when I was 53. I have had it just over a year, and ridiculously I have a cry about it at least once a week, why I don't know because there's sod all I can do about it. Currently I am decorating a spare bedroom. This is the thrid week so far whereas before my contracting PMR I would have had it licked in a week. But that's the nature of the condition. Whilst you're getting through it you have to slow right down and learn to listen to your body and when it tells you it's tired, slow right down or stop because if you don't you'll pay the price for a couple of days after. Oh by the way if you do have PMR gabapentin or indeed any other pain killer won't help. You will require an anti inflammatory drug and only prednisone will do. Ibuprofen will not do either. You say you have an appointment with your Dr this month. Blow that ring up the surgery tomorrow and get an appointment Asap, and if the scans reveal nothing request a referral to a rheumatologist Asap. If you do have PMR then the pain must be unbearable, I cried and cried the pain was so bad. Let us know how you get on. Regards christina 
    • MrsO-UK_Surrey
      MrsO-UK_Surrey christine58469

      Posted

      Christine, like you I was given numerous x-rays and scans in an effort to get an answer for unbearable pain that saw me bedbound for many months and travelling to hospital rheumy appointments by ambulance and wheelchair, all to no avail.  I was eventually diagnosed with PMR when additional symptoms arrived on the scene caused by GCA, a linked condition, started on 40mg of Prednisolone and felt so much better within hours.

      I'm assuming amongst all you tests you will have had ESR and CRP blood tests.  If these are raised it can point to PMR but not always - about a quarter of PMR sufferers never have raised markers.  Having said that my markers were off the screen but it didn't lead to a diagnosis!

      See your Dr asap (or better still another Dr in the practice for a second opinion).  Ask them to prescribe a trial dose of 15mg of Prednisolone for a week or so.  If you have a good response of at least a 70% reduction in your pain, you will have found the answer.  At the same time, ask for a Vit D blood test - severe deficiencies can lead to pain similar to that of PMR.  We have also come across a few people whose pain has turned out to be caused by a hormone deficiency, but your early morning pain sounds very much like PMR.  Good luck and do come back and let us know how you get on.      

  • christine58469
    christine58469 katie.k.

    Posted

    Dear Mrs O & christina

    Thank you so much much for your feed back.I'm jotting down all your suggested tests and taking them with me to the doc. I'm just hoping he does'nt roll his eyes if he asks where i discoverd the name and symptoms and i say i googled it.I'm sure he won't.Normally i'm not very assertive when it comes to doctors but i will have to press him on this for my own sanity.Another question does anybody suffer pain in their fingers and how do you get any sleep i've taken zapain and gabapentin and i'ts 12:13 at night and don't feel sleep any where near me. Just as well i don't have a job to get up for i lost that last year due to all the time i've taken off because of this.Oh well let's see how many reruns of the bill are on through the night.Once again thank you so much ladies and will let you know the out come of the docs appoinment.

  • christine58469
    christine58469 katie.k.

    Posted

    Dear ladies

    After my last post i could'nt sleep so i started reading some of the posts. The more i read the more i think it is PMR. I found the answer to my question about painfull fingers and hands yes another symptom i have.The only thing i'm worried about now is that 3 weeks ago the left side of my scalp was sensative for  2 weeks and i'm getting bad headaches. Thought this was pretty weird as i've never had this before. Sensative scalp has'nt returned should i mention this to doc when i see him   many thanks christine

    • tina-uk_cwall
      tina-uk_cwall christine58469

      Posted

      Morning Christine, you must be assertive when it comes to your health. Also there are many drs and even specialists who know relatively nothing about PMR / GCA although PMR is not a rare condition. Approx 1 in every 1200 will get this condition and although men do get to, it's mostly woman. I suffer from cold sores terribly, maybe one a month, always have, and never on my lips! But I always know when one is coming because I get a very nervey pain down the side of my face for at least two days prior to it erupting. Also, if you'v been in a draft or in the cold you could very well get a neuralgia type pain in your rad or down one or both sides of your face. Having said that you must mention to your Dr this pain and your headaches. I assume you have looked up the symtoms of GCA. Please do not be alarmed but most definitely be very aware. I don't know if you have had any blood tests but they should definately be taken and the results will be back in a couple of days. I've never had pain in my fingers but pre diagnosis I had pain in both my thumbs and in the outside wrist of my left hand. When put on prednisone all that pain went along with all the other more common pains of PMR and when I had a flare up in October lady year, the pains in my thumbs along with the more common PMR pains came back, when I upped my dose to cover the flare up all the pains    Went. Speaking as a 53 year old who must have visited my Dr 20 times during the time prior yo my rheumatologist appointment- and I never go to the Dr, infact I hadn't been for over 5 years - I don think she even thought it was PMR either because I was so young or because she was just a rubbish Dr. Do let us know how you get on because the bill was never that good to watch the first time round met alone having to watch the reruns!! Christina 
  • christine58469
    christine58469 katie.k.

    Posted

    Hi every one,

    Just an up date on the discussion i was having a couple of weeks ago with some ladies. I was the one who was watching re-runs of the bill    yes i know so sad. Well christina you would have been so proud of me to-day when i went to the docs. I'd had a really bad week the pain in my arms had been waking me up during the night as well as first thing in the morning and to say i was p*****d is putting it mildly so i was'nt in the mood to argue and just to let you know i'm 5 foot 2 scottish women and very scary looking when i loose it and knew to-day was D-day i was'nt taking any prisoners. I'd wrote all symptoms down and PMR at the bottom of piece of paper marched into my docs slammed it down looked him straight in the eye and said  right it's not my back i'm still in pain and this is what i think it is   well he just looked at me smiled and said i think your right.I was so relieved i started crying then he asked me why i was crying i told him i'd read so many other peoples storys about crap docs not acting quick enough and i was just so happy he knew all about this disease although he did comment i was quit young to have it but i mentioned you christina and he did agree.So i'm going to have my bloods done on Tuesday and i did mention they might come back clear he does agree with this but he'll have to rule out fybromyalgia as well but he will start me on Pred after he gets results  Soooo don't mess with the the angry scots women again. The only thing i'm worried about is that the back doc at the hospital gave me all clear on my spine but contacted my local physio who has arranged to see me next Thursday i told doc this and he said just tell him how your back feels but i'm very worried he'll touch my arms or try to get me to lift them and i just do'nt want anybody poking around me causing pain. So i'm so glad to let you know at least i have a doc who's heard of PMR and knows how to treat it.  

    christine 

    the really angry scots women 

    • tina-uk_cwall
      tina-uk_cwall christine58469

      Posted

      Hey how great do you feel now then? Good on you. Remember if he puts you on prednisolone, if you have PMR, you should feel a difference for the better within 4-6 hours and then a  good 90% difference for the better still over the following next couple of weeks. Hopefully he will keep you on a medication regime very similar to the Bristol PMR plan. (15mg for 6 weeks, 12.5mgs for 6 weeks, then 10mgs for anything up to a year. I was on 10mgs for 6 months). If you don't feel any better in the above time scale then he must look to see what else you may have. But at least he has the ball rolling and more important he knows that you are not a push over and that is very i powering for you. 

      I hope all goes well for you and you at last will soon be pain free. Oh and by the way, we have a very new member, a lady, and guess how old she is? 42 years old! So this really is a condition that effects youngsters as well as the more accepted age range. Regards, christina. Ps, mention to your physio that you are being tested etc for PMR because there are certain procedures they do not like performing on PMR patients. Christina 

  • christine58469
    christine58469 katie.k.

    Posted

    Hi ,

    Thanks for replying think it's more a relief than anything else there's been times when i've really thought i was going bonkers i'm sure you know what i'm talking about as after reading your story i think you've probably been there asked the doc if i should be worried about any side affects from pred he said nothing to worry about  seems to know his stuff thank god Should i be referd to a rhemy if my doc diagnoses me with PMR or does'nt it matter if he's taking good care of me

    christine  

    • tina-uk_cwall
      tina-uk_cwall christine58469

      Posted

      Hi Christine, many patients are only treated by their gps with PMR. And drs only refer suspected PMR patients if they are classed as atypical. That means they do not fall into the normal PMR group. For eg, I was only 53 and although 53 year olds do get PMR they are the exception to the rule, therefore, atypical. However, if I am correct GCA patients should always be referred to consultants. 

      Now to the side effects of prednisolone. Medication with prednisolone will be long term. It is not simply a course of preds and you're cured. All the while the inflamation is present you will need preds to keep it in check. Of course the lower the dose the less side effects to harm your body. Osteoporosis is a real worry. Request a bone density test because you don't want to be given alendronic acid just for the sake of it, now that is a drug that does have some bad side effects and if you don't need it why take it. Because preds are very hard on your stomach, many drs prescribe along side preds omeprazole, as it is a drug that lines the stomach and prevents stomach damage. I take this drug as I do have stomach trouble but many people don't take it and use yogurt instead. But on this subject it is entirely your decision. But always take your preds with breakfast. I also take vit d, calcium and magnesium (RDA levels) , but take these suppliments at lunch and never with your preds. 

      So, we all want to get off preds Asap because of all the side effects but until they find a cure or develop a different drug, preds it is. Christina 

  • christine58469
    christine58469 katie.k.

    Posted

    Hi,

    Already on Omeprazole because of taking co-codomel and gabapentine so thats ok whats everybodys experience of holding down a job. Hoping if i manage pain well enough i can get back to work i lost my job last year as a waitress but i'm a chef and was hoping to get back to it   waitressing was only temp untill i found my feet after moving from scotland to wales. Is their light at the end of the tunnel workwise for me. 

    • tina-uk_cwall
      tina-uk_cwall christine58469

      Posted

      Christine, there are many members holding down full time work and some jobs are fairly manual. I run a holiday cottage business, 2 cottages and I clean them both on change over days. They are both 4 star rated and I have a 10 out of 10 rating for cleanliness, so I clearly don't do that bad. Before i was diagnosed the pain of cleaning 2 cottages almost killed me. I was in so much pain that I practically cried for 5 whole hours when cleaning the cottages. In the end my husband had to help (that was when I was worried I'd loose my rating because I'm sorry to say bob's pretty rubbish when it comes to a Hoover and fluffy duster!). But now I'm on the medication I garden all week, the cottages both have gardens that have to be kept in good order, clean the cottages on the Saturday, then it's church on Sunday morning followed by all the washing and ironing from the cottages in the afternoon, so work and PMR can co exist, BUT, it is very important to pace yourself and not stress yourself out, because PMR loves stress, and I may have made it sound like fluffy bunny land but I get exhausted quickly and the pain in my shoulders following a whole 5 hours if cleaning can leave me wincing but as I say the most important thing is not to over do things. Hope that helps. Christina. Ps, you may be able yo come off the co codamol and or gabapentin if the preds work. Prior to my diagnosis I was given gabapentin to help with my pain, obviously it didn't work, but now I'm on preds all the other pain killers they tried me on I do not need anymore. Christina 
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