Misdiagnosis and confused

hi bit of a long story but in jan/feb 2016 noticed that I was having trouble lifting my feet to put my shoes on get dressed etc and was experiencing muscle pain at the back of my knees

this was also affecting my sitting posture especially when driving as my knees would become very sore but once I was standing it wasn't too bad other than if I raised my legs as aforementioned

this went on for 2-3 weeks and I hoped that it would clear but it was getting worse and I was now suffering extreme cramp in both legs when both sitting and worse still lying down very very painful

went to the drs who gave me something for the cramp along with cocodamol for my knee pains which by now was swelling in my right knee.

although the cramp issue finally settled I was now experiencing severe pain at the back of both knees the swelling continued in my right knee and I could barely raise either leg it was getting harder to drive my car and I couldn't get comfortable sitting or lying down

went back to the drs who reluctantly put me on a course of tramadol but stated he didn't want me on them for too long and also changed the cocodamol for zapain as I was having problem taking the cocodamol (bitter taste and large tablets)

getting out of bed in the mornings was becoming increasingly difficult and was taking 5-10 minutes in the morning to get going as they were very stiff and painful tried getting back to see my dr but this in itself was becoming extremely diffulcult as there was 2-3 weeks waiting time even for emergencies

the swelling and pain was becoming more intense and I ended up at the local a+e department( in fact 3 times)first time I was referred back to my doctors to make an appointment with the orphopeadics, the 2nd time xrays revealed no gap between upper and lower leg and the 3rd had to call for an ambulance as was in so much pain could,nt drive, sit and absolute agony whilst at the hospital the duty dr at a+e got the orphopeadic department to take a look at my right knee and they drew 60ml of fluid out which they sent off for analaysis they also told me that they were going to take me in the following week for a knee flush and endoscopy to see what was going on they also gave me liquid morphine to ease the pain took my bloods and told me to continue with the medication the dr had prescribed. A week later I went to the hospital for my op on a Wednesday tea-time and was scheduled to have the op Thursday morning however I was and had been in so much pain that I had been unable to sit for more than a few minutes at a time the pain at the back of my knees felt like all the muscles/tendons etc were being gripped extremely hard and strangely it somehow was easier for me to actually stand and pace(shuffle) around the living room sitting or was driving was out of the question I was reduced to tears and this continued even at the hospital when I arrived I couldn't sit or lay on the bed they administered several doses of morphine as well as other painkillers/anti inflamatories etc and it took quite some time for them to kick in eventually they did around about 11.30 at night I finally managed to fall asleep but awoke 40 minutes later needing the toilet suddenly I found that I couldn't move at all the stiffness and pain was everywhere as well as my legs it was in my groin my hips my hands, arms, shoulders everywhere I tried moving my legs but I could,nt not an inch, more morphine, blood tests and painkillers I must have finally dozed off some time later and awoke later feeling somewhat high and whoosy from the meds and was prepped for my op

after the op I felt great hardly any pain was able to move albeit a bit sore and was allowed home a few days later, was given an appointment for out-patients with orphopeadic but whilst at home the pains slowly started to come back and by the time I got to see the orpho I once again was experiencing pain at the back of my legs /knees hips groin shoulders and hands again unable to drive I had to get my brother to take me to the hospital which is roughly 3 miles away but would have to stop once or twice en route and stand best I could until the pain/agony subsided. The orphopeadic told me that they had suspected gout but after analysis of the fluid that they had taken from my knee they had ruled that out they took more bloods and suspected that it was some form of blood disease and ruled out 2-3 other conditions in between each visit until finally deciding that I had pmr and referring me to the rheumatologists. they put me on a course of prednisolone 15mg omeprazole to protect my stomach and was told to continue with my drs meds It took around 9 days before the pred started to help and I spent most of that time in bed hardly able to move I felt constantly tired and lethargic and I recall one incident when I was unable to get up from the toilet for over 10 minutes the pain in my shoulders and legs was excruciating and I was in floods of tears (not very manly)

finally got to see the rheumy in august and he was angry that orpho had diagnosed pmr stating they had no right he was unhappy that I was on preds and wanted me off them asap reducing by 2.5 mg a week. he felt that it wasn't pmr and was possibly inflammatory arthritis and he also wanted me to start a course of methotrexate once I had seen the nurse I was started on 10mg of metho once a week (tablet form) rising to 15mg after 4 weeks. Whilst taking the 10mg I was fine but reducing the pred was causing problems I was back at work by now and as a chef I work split shifts the muscles at the back of my legs were starting to tighten up again and though nowhere as bad as before was becoming worse I also found that I was getting very sleepy whilst driving home in the afternoon and was struggling to keep my eyes open and also struggled with the glare of car headlights when returning to work at tea-time. On reducing the pred to 10mg the tightness/pain in my legs/knees was getting worse although I no longer had any pain in my shoulders or hands and just occasionally in my groin /hips but only moderate.

I rang the rheumy nurse who after speaking to the rheumy said that perhaps I had been told to reduce too quickly and suggested that I go back to 15mg and to reduce at the rate of 1mg per month and this worked I was even able to go away on holiday to mexico with no problems whatsoever. Meanwhile increasing the metho to 15mg I started feeling very unwell 24 hours later and would feel like this for three to four days it made me nauseas and extremely lethargic and my eyes felt really sore again rang the nurse and was told to reduce to 10mg pending appointment with nurse to show me how to self administer injection of metho rather than tablet form

Meanwhile have since reduced preds to 10mg but pain in knee and muscles at back of legs getting bad once again once I had tapered down to 13mg and has got slightly worse with each 1mg reduction. Saw the rheumy today for 2nd time and he wants me to continue with the pred reduction and the injected methotrexate on examining my knees he acknowledged some swelling returning in my right knee and is now arranging for me to have injections in both knees (presumably cortisone) he still says that its not pmr but seemed a bit evasive when I asked what it was saying that it was an inflammatory condition . I,m really quite concerned now as I feel that this past year I have been fobbed off with so many things and I still don't know whats going on, starting from not being able to get in to see the drs when theres a problem (ive now changed surgery and they are brilliant) to be told its one thing and then another and another I,m scared to go back to where I was pain wise but I can feel this gradually returning and that's a place I don't want to be, unable to sit ,drive or even walk the dog I,m worried about this metho injections as well although im prepared to give it a try but the 15mg made me very unwell and the reduced 10mg doesn't seem to have done anything I think I remember the the rheumy saying that it would help me come off the steroids but that clearly is not the case (maybe 10mg isn't enough ) although I persevered with 15mg for 8 weeks

I came across this site last year when looking up what polymyalgia was as I had never heard of it ive been meaning to post on here for sometime but was afraid that it was going to be quite a big post and so it has. If you have taken the time to read this thank you so much I feel so much better just for being able to share my experience the problem being that when someone has such a life changing condition there aren't many people out there that you can turn to for help ,advise or just a general enquiry since signing up its reassuring to find similar (or not in my case pmr ?) sympathetic people who not only listen but offer good sound advice too so many thanks to you all and keep up the good work

29 Replies

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  • Goodness Me Sutony57 what a terrible time you've had & to be honest you still really don't have any answers, I'm awake early, so thought I'd say Hello & l'm sure you'll get many replies as the day goes on.

    PMR can sometimes be difficult to get a firm diagnosis on, I've had it for five & a half years, diagnosed & had treatment for 5years & l know my GP still doesn't believe the diagnosis is correct, despite 3 Consultants verdicts to the contrary!

    I'm heading to see him this morning prepared to do battle to get my knees X-Ray'd, he's Retiring at the end of March so l'll have a new GP to break in, but as I have a great Rheumatologist to back me, it might not be too bad. I too am on Methotrexate for the second time, I tolerate it well & it did help me get from 18mg to 7mg until it was stopped for surgery.

    I hope you've kept a copy of your post today & update it with dates as you really do need another view on all what's happened to you, which to be honest sounds horrendous.

    I'm glad you've taken the time to post as someone on here may have some good pointers for you & be able to offer you help in the way forward; by the way have you had any blood work done, with results you have access to either at the beginning (most helpful) or recently?

    My Very Best Wishes & I sincerely hope that you can get some answers & more importantly the correct treatment.

    Mrs N

  • Hi Mrs nails and many thanks for your reply yes it has been a very long road and I fear I'm starting to roll back down it the way I've just travelled if that makes sense I don't feel any further forward than when I first started which is a year ago fortunately I do have the means to stop the pain getting too bad this time if needed but like many others I don't want to be taking any more tablets/meds than I have to I, m getting really fed up with them but realise that they are a nessecity and I wouldn't be able to function without them. I've had numerous blood tests taken throughout especially since starting on the methotrexate and because my alt markers were very high have been going every fortnight they have now come down as my folic acid was increased from one to 6tablets per week and I'm now having them done monthly hope you have been able to get the Dr to agree to the xrays kindest regards

    Sutony 57

  • Hi, I am wondering if they have given you folic acid to take with methotrexate. I take 5mg twenty four hours before metho. Others have other routines but you do need at least 5 per week I think. Hope things improve for you. Jen

  • Hi Jen

    I have 5mg of Folic Acid on the other six days I don't take the Methotrexate.

    Mrs N

  • Hi Sutony57

    Your journey sounds very similar to mine! I started having pain at the back of my knees and was diagnosed as having Bakers cysts by my GP. Several week later the pain and swelling spread around both my knees and it was extremely painful to sit down or walk. I was referred to a rheumatologist but had to wait months so paid to go private and see an othorpeadic dr. He looked at my knees and said this is not an orthopeadic matter best to wait for rheumatologist appointment. I still hadn't heard anything concerning my appointment and was struggling to go to work everyday as I had just started a new job. The pain was gradually getting worse and I could not sleep as it was now everywhere in my body. I went back to the GP who looked at me (I had also lost quiet a lot of weight as I had no appetitite) and said there was a good doctor she could recommend and again I paid to go private. I saw this doctor who examined me and also ordered many tests. I was really anxious as some of the tests were to rule out cancer!! I also had a CT, MRI and abdominal scans and further blood tests - end result PMR diagnosed. I was started on 30mgs (rather a lot) but within 4 days I began to feel better. When I eventually say the Rheumatologist he was not convinced I had PMR but has never really said what he thought I did have. This was 4 years ago and I am now down to 1mg of Prednisalone hoping to get off completely within the next month or two using the dead slow nearly stop method. So despite my rheumatologist not being convinced it is PMR the steroids seem to have worked and I am back to normal. I hope that my story helps and that you can feel some reassurance that someone else has had a similar experience and is now on the mend (fingers crossed).

  • Hi ljhome and thank you for reply I'm sorry to hear that you have had a similar time of it all as it's undeniably an awful thing to put up with Im sorry my first post went on quite a bit there was a lot more that I wanted to put but I would have been there forever I was treated disgracefully from my first Dr's and that in itself was a horror story but I'm a lot better with the new Dr's although they will only act on guidance from the rheumatologist and don't really seem to fully understand the condition but at least I can get to see them and my repeat prescriptions don't go astray and I'm given more than one weeks supply at a time so I guess I'm grateful for that I'm pleased to hear that things are going well for you and I hope that continues kindest regards Sutony 57

  • I'm so sorry to hear about your horrendous year. Diagnosis is such a big part of our experiences as it is so difficult. I tell myself that it is because our bodies don't know that they are supposed to have a clear set of symptoms, so the symptoms can be very diverse. What disgusts me about some doctors is that when they won't give a clear diagnosis, they are dismissive and can leave us in no man's land. Given the pain, that is just not good enough.I really hope you get to the bottom of this and get a clear working treatment plan. We, as patients need to take some control over our destinies and keep fighting for this, finding new doctors if needs be. I can see that you have done this, but you may need to keep doing it! It took me 2 years and 3 Rheumatologists to get a proper diagnosis, but I did get it eventually!

    Keep fighting and keep going, we are all here, you are not alone!

  • Hi suzy1959

    Many thanks to you and all the others that have replied to my post it really is very reassuring to know that their are others out there who r prepared to listen and offer advise it's been an awful year but I know that there are others in a far worse position than myself so I am really grateful for all of the replies I have received there have been times when I have felt quite alone there's only so many times I can explain to my wife how I feel and she must get fed up with me going on about it when I'm not feeling too well and you're right too in how dismissive Dr's and rheumy can be and I feel that they are not listening when I explain my symptons I also get the impression that the rheumy wants me to reduce the steroids in order to make his own assessment rather than the one made by the orphopeadic and is using me as his guinea pig to see for himself what pain I have without the pred which basically is what he was saying when I was first referred to him He repeatedly told me that steroids were not good for me long term and whilst I wholeheartedly agree I also know that without them I am in a lot of pain, at the moment I am currently down to 10mg and the pain tightness started kicking in as soon as I tapered down to 13mg from the Initial 15 and as mentioned in my previous post has progressively got worse with each 1mg drop I will try the methotrexate injections but I fail to see how they will help when they clearly weren't in tablet form like you I'm beginning to wonder if perhaps I should get a different rheumy so will go with the flow for now and see how I am in a few weeks time once again many thanks for your reply and I wish you all the very best in your fight against this awful disease

  • OMG! Your experience sounds absolutely dreadful and painful and you're still working!

    I can't offer any insights into your illness however would be surprised if you have PMR (from my limited experience) as normally the Pred would work quite quickly.

    I do hoe that this gets resolved. I cannot imagine being in your shoes.

  • Hi there Idasmum and thank you for your reply yes it has been bad especially with the working, prior to my endoscopy op I was trying to work my split shifts as a chef and as I work 12 miles away from home driving was an issue and I was having to stop every 2-3 miles and get out of the car as sitting was causing my legs to stiffen up so much and become extremely painful whilst at work the back of my knees and legs would gradually become stiffer and tighter and in my job you can't always just stop even for a few minutes but when I could I would sit for a few minutes and would kind of feel a bit better There are times when I have wondered myself if I have pmr or is it something else certainly it manifested itself whilst awaiting for the endoscopy in the hospital bed in what I can only describe as a kind of paralysis in my legs groin hips shoulders arms and hands this all dissappeared after the op for a few days but all came back until the steroids finally kicked in as of now I no longer have any of these pains apart from my legs which are slowly getting worse with each monthly taper does this mean that the pain will return in my hips groin and arms again ? I won't allow it to get as bad as it was as I have the meds to stop that if needed this time but at the same time I'm trying to go with what the rheumy wants me to do only it doesn't seem to be working and I'm scared to let it go back to far to what it was the rheumatologist yesterday was pretty much convinced that it isn't pmr but was also very sketchy about what it was but insistent that I continue reducing the preds I appreciate that it takes time to make a full and definitive diagnosis but it's been just over a year and I feel no further knowing what my condition is than I did last year thank goodness I found this site and all the very helpful and kind people here to offer help advice and understanding kindest regards Sutony57

  • Goodness! what an awful time you've had. From what I read, PMR comes in many more guises than the medical pros would have us believe - for me, because my shoulders didn't ache, just my thighs, they refused to believe it was PMR. I really hope you find out what's going on. Keep in touch.

  • Hi, I was very interested to read your story because that's exactly how my joint issues manifested, going back now about 11years ago. I was a florist and then a tutor for 30 years but had problems with leg pain and falling from a child. I used to be over weight as a child and everything was put down to that. Then I was diagnosed with asthma at 15 and was told I'd had it from birth, this meant I could do more and became sporty, playing tennis to a high level but found I kept dislocating my ankles, wrists and elbows and fell and broke my wrist and arm.

    I used to put leg pain down to my job and never thought any more of it.

    In my late thirties I started playing lawn bowls and found my knees were hurting. Then one day my coach shouted my over and said had I noticed that both my knees were swelling ?

    To cut a long story short I had my left knee operated on as the said I had torn the meniscus and when the went in I had to have something removed from the back of my kneecap. I then had to have the other knee drained and was told I had grade three osteoarthritis in my right knee.

    I was referred to a pain specialist who gave me an MRI scan and he found I had had a condition called hypo mobility disorder from birth, which meant that my joints move the wrong way when I move. In particular my knees, wrists, elbows and my feet are totally flat. My spine is affected and I have Ankylosing Spondylitis as the discs have move around and I have arthritis in that now too. My discs have herniated because of the condition. I also have fibromyalgia which is 'multiple' even my hands and fingers hurt so much I struggle to sleep. Since diagnosed it's been like opening a can of worms and I've also been found to have Pernicious Aneamia which apparently is the cause of everything because it was only found late and it's also caused tumours to grow in a lot of places. I'm not saying you have PA or anything but it's interesting how you can get symptoms of one thing then it is caused by something you wouldn't dream of!

    I've had injections into my knees, I had a special course where I had to go every week for a month and this put a cushion into my joint to try to ease the wear and tear. That was very effective but it only lasts a couple of years. I see the pain specialist every eight months and have injections into my spine and my knees. The nurse rings me in between to check how I am doing.

    I cannot take anti inflammatorys which are normally given for these conditions i.e. Diclofenac or Ibuprofen as I'm asthmatic. I cannot have tramadol either as it affects my heart. So I'm on a cocktail of dehydrocodeine, amytriptyllin and paracetamol. The did try me with Pregbalin for nerve pain but I felt drunk and it didn't kill the pain.

    Unfortunately I've had to give up work with everything but I'm hoping to tutor from home at some stage. Unfortunately I've got more tumours one in my leg, just under my knee, which isn't good when you have to wear a knee brace lol and in the bit of thyroid they left in. These things keep holding me back.

    For me I have to keep moving even though the pain can make me physically sick I have to move or the swelling gets worse and I've had to fight for treatment.

    It is annoying though when one doctor contradicts another and you think 'what the hell?' these guys haven't a clue!

    You just have to keep fighting.

    Look on the internet for information on good consultants in your area and I would ask to be referred to a pain specialist they can do tests and refer you to other specialists.

    Good luck!

  • I think I understand where the rheumy is coming from in not believing it is PMR - or possibly not "just" PMR. If other painkillers help with the pain then that isn't usual in PMR. There are several forms of inflammatory arthritis - and his being evasive is probably because he doesn't want to commit himself until he has more evidence.

    There are a few things that can present very like PMR - as Paulaw says. But the others respond to different drugs and they do have to try a few to get to the best ones. He will also probably do some scans to find where the inflammation is - but being on a higher dose of pred interferes with some of them and they won't show as much.

    What hospital are you under?

  • Hi PmrPro Many thanks for your reply as a regular reader of this site I value and respect your comments it's a shame the rheumatologist could not explain it quite so well instead of coming across as so dismissive. That said I kind of assumed that this was what he meant as on my first visit with him he not only was angry with ortho for diagnosing the pmr but he also stated that as well as being his job and not ortho to make diagnosis that it also made his job diffulcult due to the preds as he couldn't see the inflammation. However what concerns me is his determination to get me off the preds asap which although I'm trying to do by reducing at 1mg per month and I've slowly come down to date from 15mg- 10 but I have started to feel the muscles at the back of my legs start to tighten in particular behind both knees and it's started since I dropped to 13mg and is getting worse with each subsequent taper my biggest fear is that I may well soon have the pain return to my hips groin shoulders arms and hands( all of which so far have not returned since I was first put on the preds) and yet the methotrexate that he told me would help to wean me off the steroids clearly haven't/aren't helping . Admittedly I have had to reduce the methotrexate to 10mg instead of the 15mg so it may be that I, m not a high enough dose but I did persevere with the 15mg dosage for 8-9 weeks despite it making me feel very ill and I was already starting to feel the pain in my legs by then.I will of course give the injected methotrexate a go but it wasn't helping before and I can't see it helping other than being accepted more readily by my body rather than orally. My rheumatologist is Dr Thomas and I am being treated at the James pajjet hospital

    Gt Yarmouth kindest regards Sutony 57

  • Hmmm - he seems very touchy about people already being on pred when he gets to see them. And very keen on getting them to reduce it speedily so he can see them without it whatever happens (you aren't the only one).

    If what you have is PMR (and it may well be) then there is no guarantee that being on methotrexate will make any difference. And he should know that. It was always going to be pretty uncomfortable - it might have been better if he'd stuck with taking you down to 10mg straight away after the holiday and done the rest slower. Why on earth can't they explain what they are aiming for? And of course - they have next to no idea what it means to people with a "real" job that doesn't offer 6 months off on the sick on full pay.

  • Hi sutony I can't understand if pain is coming back when you keep reducing. Surely this is PMR.

    When I first came down with neck pain and pains in my legs. I couldn't walk or get in or out of bed, the pain like bad muscle pain.

    But when doctor got results of blood CRP and ESR were very high. She referred me to A n E I was so lucky I met a good doctor up there, she really took an interest.she kept putting me on different size chairs like low ones to see how I struggled, She thought it was PMR but she got a rheumatologist to see me, Again she thought it was PMR, BUT SHE SAID THE ONLY WAY THEY KNOW IF IT'S PMR IS IF PAIN GOES, I think she said in 12 hrs after taken pred.

    I think I woke doubling the night and I cried with relief because pain was gone and I could get out of bed, do let us know how you get on X

  • omigosh, what a nightmare, well i certainly haven,,t suffered to the extent you have, although, when dr,s tell you misdiagnosis, as my rheumy eluded to my gp,s original diagnosis, and she can,t confirm that diagnosis, and i am now on pred, maybe shouldn,t be, it,s very scary when dr,s can,t tell you exactly what is causing your pain, and it is very stressful just thinking about the unknown, and perhaps not being treated for exactly what condition or disease is causing this pain, i read and research a lot, looking for answers, which is good and bad i guess, but what is one suppose to do when your dr,s can,t tell you what is wrong , well i am sorry you have endured so much pain, and still searching for cause, i wish you the best, and hope you get some confirmation of diagnosis asap,

  • What an awful time you have had I am sure the senior folks here can offer some advice for you. Good luck

  • Hi, Sutony57, sorry to hear that you have had an awful bad time with this illness. I had the same problems, pain from neck downwards to anxles and swelling of right knee with terrible pain. The hospital told me it was bakers cyst and it would go away by itself. Just as I was leaving the ward, I met a doctor friend of mine and I told him about the pains and I am struggling to get out of bed, put on my socks and shoes. He told me to go back to my GP and tell them to check for PMR.

    That day , I could not get a doctor, instead I got a nurse practitioner, I convinced her and she consulted with someone and prescribed Preds, starting at 15mg a day and to see another nurse for blood sampling. Within 5 days all the pain disappeared, that was April 2016. Now I am on 4mg pred and am feeling good, I took the slow reduction method advised by fellow members.

    I hope and pray you get well soon, those pains are real cripplers.

    Warmest Wishes.

  • I'm so sorry for you.....I found your post very interesting as I'm gleaning as much information of the various symptons of PMR etc as I can.

    I was diagnosed with PMR by my GP 3 weeks ago and put on Prednisolone 30mg a day. Within 3 days I felt brilliant...all swelling had gone from my eyes, hands and lips...the swelling was accompanied by a painful dark red rash which also disappeared. I could walk with very little pain for the first time in 3 years.....it was like a miracle and I was so thankful to get a diagnosis and some effective treatment. I went into hospital 3 days later for a planned hip replacement so the steroids had to be cut down fairly drastically. The swelling returned along with pain but the hospital supplied Morphine and all went well apart from the wound not healing as quickly as it should ( a side effect of steroids).

    My GP wants me off Prednisolone as soon as possible and it appears they have changed their minds about my diagnosis....nearest guess now is Rheumatoid Arthritis! I have asked to see a Rheumatologist but Heaven knows when that will happen.

    As I reduce the steroids all the old problems are returning....like you I'm tired of all the guesswork that goes on and feel the need to remind the various GPs I see that while they decide what I have and how to treat it I am having to live with pain, itching and constant exhaustion.

    I wish you all the best and I'll follow your posts to see how you get on....chin up!

  • I think it is the usual problem - 30mg is really too high a dose as a starter - 15 and possibly 20mg if needed is better in that only PMR really responds so dramatically to a moderate dose of pred while other things such as inflammatory arthritis respond more slowly or far less but will also respond to high doses, and 30mg is a high dose.

    I can only assume that the fact morphine helped with the pain has made them doubt their diagnosis - because most people will say no other painkillers help PMR pain. However - your description of a rash isn't something I've heard people with PMR complain of before.

    I do hope you get a rheumy appointment soon - because the pain of PMR makes mobilising after a hip op. There are several people who have had hip replacements done while still on pred, though mostly at 10mg or less.

  • Hi susyj

    Sorry to read your story, although it's academic now, why did you have to reduce your steroids rapidly before surgery? PMRpro will know more than me but I wouldn't have thought three weeks on steroids would have affected you healing well?

    When I had surgery, I was given Hydrocortisone Cover in theatre & then an increase in Prednisolone for two weeks Post operatively & experienced no issues healing at all.

    Why has GP changed his mind? I do think you need to see a Rheumatologist for a definite diagnosis but am concerned about the swelling of your eyes, hands & lips along with the rash? Not typical PMR but I've had no experience of RA so that maybe influencing your GP's thinking.

    My Best Wishes to You & hope you get a diagnosis soon 💐

    Mrs N x

    PS

    Did you have bloods done before GP started you on Prednisolone and has he since checked for the Rheumatoid Factor or is he just guessing at RA?

    TBA you could do with posting your story in a new thread (copy n paste the relevant bit) as you could get more answers but I've tagged PMRpro into this so she might have some ideas re the swelling.

  • Thanks very much for taking the trouble to reply.

    The swelling came on in a matter of days....hands, arms. lower legs, eyes, lips and eyebrows also had a the dark red rash. My eyelids appeared to be full of fluid ans were almost closed....after two days on Prednisolone this had mostly disappeared. The skin on my back, ankles, tum and midriff had been sore and itchy for a couple of weeks.

    I think GP changed his mind because I had seen another doctor the previous week that I'd never seen before and he ordered more bloods to be done. His main concern was that my pain was not in the usual muscles in shoulders etc but in all my joints and I do mean all! Fingers, wrists, elbows, hips, knees.

    I will re post...thanks.

  • That REALLY doesn't sound much like PMR - especially if your pain is only in joints. PMR is definitely muscular even if people do have some joint pain due to synovitis.

    However - have the GPs considered the possibility of another vasculitis? In which case you definitely need a rheumy and possibly a referral to a specialist vasculitis unit. There is a very good VasculitisUK forum on HealthUnlocked.

  • Hi Susyj

    How long did you have the rash & the swelling? It makes me wonder if that was some kind of allergy especially with it improving with the Prednisolone & might be totally unconnected to all the muscle & joint pain.

    Mr N x

  • Hi god you have had a terrible time, just wondering when you had your blood taken was you CRP and ESR up, these are the inflammatory markers i the blood,

    I never heard of PMR or GCA until I developed neck pain and stiffness and then the pains in my thighs and groin, like couldn't get out of bed, but my blood markers were very high so got a diagnosis immediately ( now i did go on to get GCA )

    I know some people don't have high CRP or ESR.

    Curious to know if your were up?

    Do hope your get a diagnosis. Take care

  • My GP called me in after getting the results of my bloods...I can't remember which were high but I'm having regular blood tests now and the nurse remarked that she'd never had to do so many tests on one person! I had a letter yesterday from my GP asking me to go in for repeat tests for Viral Titres.....not sure what this means.

  • I think the same Mrs Nails.Before the swelling I had sore sticky eyes for a couple of days, then my eyeballs started to ache and under the lid was very sore and red.....next morning the lids were very swollen with fluid and I could hardly see without holding the lids up with my finger. My GP said this was my immune system attacking itself. I was already taking anti histamines for itching so the dose was raised to maximum.

    All of the above symptoms disappeared within 36 hours of starting the steroids along with the pain in my joints and I felt well for the first time in years.

  • I wonder if they tested your Ig Antibodies? There are differing ones IgA; IgE etc looking at how the body is reacting to various things, Allergens/Infections etc

    One of my sons is extremely allergic & has IgE Levels off the scale!

    I've just re read you post & I think they must be testing everything to try & find out what it is.

    Good Luck 🍀

    Mrs N x

    PS let us know how you get on, I may be away when you find out so if you could copy it to me in a Private Message (the two speech bubbles at the top of the page)

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