Please help 😣

Hello everyone

It's been a while since I was here as after being diagnosed with PMR. I was then later told by the rheumatologist that I didn't have that.

As short as I can this is my story... In 2014 I had a nasty virus for 6 weeks and also was still grief stricken after losing my mum (my world). I then developed a pain in my hip, shoulder, thighs and struggled to do normal things I was 49 at the time. Eventually after 6 months my gp diagnosed PMR. Steroids given and results great. I had during the following year a few hiccups, temple headache, raised eye pressure. Pressure was checked at hospital and confirmed OK. Then my gp had a accident so a locum was there, I had esr checked regularly and this is where things changed. The locum dis believed I had PMR as she said my ESR was never high enough and I was too young. By the way my ESR was high 20's at worst and got down to 6 on steroids. So she referred my to rhemy. My gp never had referred me as I was getting better and treatment was working well. The locum insisted I stopped steroids which I didn't, but I weaned myself from 10mg to 7mg by the time my apt came. He also disagreed with PMR and gave me 10 weeks to be drug free!!!. 10 weeks later I felt like I'd hit a steam train, I gave up work, my pain was back with a vengeance and I hurt in more place than before, hands, back, ankles. Basically I've felt wiped out. On my return I was told I had Fibromyalgia and given drugs that didn't work and discharged from his care. My daily life has become not leaving the house for days, my pain completely debilitating and my life non existent. Throughout the past 5 months my gp has still thought it was PMR as Fibromyalgia doesn't present with a raised esr and steroids don't work as a treatment. 3 weeks ago she decided that a 2nd opinion was required and took my ESR which was 28. A referral was done and I was waiting. However on Fri I woke with a temple headache and couldn't stop the pain, I still had it yesterday and then felt my left temple raised and sore. I went to gp this morning and her concern now is its GCA. Urgent bloods have been taken and she prescribed 40mg of steroids to start today. I have to return for results tomorrow and if raised again she want me to be seen this week. To say I am angry, frustrated, scared, upset is an understatement. I am thrilled my gp is behind me, but due to other involvement feel I have gone back 3 years!!! So sorry for the essay and hope someone will read till the end!! Has anyone else experienced anything like my story. Is it likely I have Gca? Could it still be PMR? If anyone could comment I would be grateful. Thanks for reading.

25 Replies

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  • Hello wooh66

    I am so sorry to read your story, l haven't had GCA symptoms but have a similar journey to many with PMR.

    I just wanted to say Hello πŸ’ & reassure you that someone with GCA symptoms will pick this thread up & reply to you. I'm glad your GP is supporting you & already started you on Prednisolone. I'm sure you must be very angry & frustrated at all that has happened to you especially the stopping of the Prednisolone & the change of diagnosis, it's beyond words really.

    I'm not sure what to wish you for your results tomorrow, other than to wish you well πŸ€ Please give us an update after you see your GP tomorrow.

    Regards

    Mrs N x

  • Thank you Mrs N. I just want to be on the road to recovery and be treated for the right condition.

    Thank you again for your kind words.

    Much appreciated at a time where I don't know whether to scream or cry.

  • πŸ’•πŸŒΉπŸ’

  • Hi wooh66,

    Sorry to hear your tale of woe - no wonder you feel so disheartened. Positive that your GP is on top of things, and has done the right thing at last starting you at 40 mgs, hopefully you will get good results from that dose.

    The bloods results won't necessarily confirm which you have - PMR or GCA, the ESR is usually, although not always, raised in both, but from the symptoms you describe it could well be GCA. A biopsy may prove GCA, but that's not full-proof either as we all know.

    Both your locum and Rheumy sound very ignorant, both in their knowledge of PMR (why do they get fixated on ESR levels and age!) and their attitude to patients! Locum could be excused , but Rheumy should know better.

    Hang on to your GP, at least he sounds sensible - and good luck.

  • Hello Dorsetlady

    Thanks for your comment.

    I am pleased at least to be back on treatment and have my lovely gp on side. Today she was very concerned which is good in one way, but worrying in others.

    Yes I disliked the Rheumy from the first visit as he treated me like I was a hypochondriac!. According to him patients with multiple joint pains can't have an arthritic type of condition.

    Anyway appreciate your points thank you

    πŸ‘

  • Wooh66, I'm so sorry that you've had such poor treatment. Hang on to that GP of yours, she is absolutely right when she says Fibro doesn't have raised inflammation markers and that steroids won't work on it. I know, I have both Fibro and GCA (not to mention PMR) and they are totally different beasts. Good for her putting you straight on steroids and I hope you are getting some relief.

    Your frustration and rage is coming through clearly, but you are better than me - I would have been either chewing the carpet, or running through hospital corridors with a gun - probably both.

    Yes, it could be either PMR or GCA or both, but take heart as you now have the opportunity to right a few wrongs, although that does not wipe out the last 6 months.

    We are battling all the time to raise awareness of these conditions and it isn't an easy task, particularly as some medics are still stuck in their medical ruts (for want of a better description that I couldn't leave on here).

    Do let us know how you get on this week please.

  • Hello Pokadotcom.

    It's reassuring to read that you agree that steroids don't treat Fibromyalgia, so points to the question mark on why then did I do so well until they were stopped. I'm sorry to hear you have the full works πŸ˜”.

    Your comment on how you would address the anger did make me chuckle, thank you for that πŸ˜‚

    Thank you on will post an update.

  • And another person to agree with the others.

    Where on earth do they get this idea that a patient with a raised ESR and/or CRP has fibromyalgia? It merely adds to my suspicion it is the default for the lazy doctor as it can't be proven or disproven. If you have inflammatory markers - it says INFLAMMATION. Fibro is NOT inflammation. End of.

    If your ESR was normal - so it jolly well should have been: you were on a high enough dose to manage the inflammation. It REALLY isn't rocket science. And how ignorant of a doctor to tell a patient who has been on pred for more than a month to stop - she could have made you REALLY ill. And between them - you have lost your job (I assume?).

    IF this turns out to be GCA (and it does sound horribly suspiciously a possibility) I personally would be filing an official complaint against them both.

    Where are you? Because you need a sensible rheumy.

  • Hello PMRpro

    Thank you for your comment.

    Well exactly as you say an inflammation is exactly that even if the reading is not through the roof it's still there and shouldn't be discounted. However when you are the patient you feel drawn to believe the "professionals" must be right!! Fortunately my gp thought differently.

    Thank goodness I was informed enough to know stopping pred was dangerous and didn't take her dangerous advise.

    I actually left my job as I couldn't cope as in the mix of everything, I had a totally unsympathetic boss, so had no choice.

    I said exactly that to my hubby tonight that if this turns out to be the case that's its GCA, I will be making a complaint, as much to protect others from this trauma I've been through.

    I'm in Essex, the gp was already sending me to a different hospital and said today will still be the case if she requests me an urgent apt tomorrow.

  • The guy at James Paget has seemed very thorough and approachable. Where did you get sent first? Though it is possible to come up against anyone on a bad day...

  • I was referred to the most local to me the Broomfield hospital team in Chelmsford Essex. I'm now being referred to Colchester Essex.

  • Hello wooh66,

    I would just like to add my condolences to all the really informed communications you have received from the lovely people on here. You lost your world and your body is expressing this in my view. Your treatment at the hands of some of the medics has been appalling. Your symptoms sound text book to me. I really hope that PMR has not developed into GCA, if that is the right term. If it has, I wonder if all the messing about with your treatment precipitated this. You certainly seem to have grounds for complaint, particularly as it led to loss of income,

  • Sorry my finger jerked and posted. I just wanted to wish you well really. Keep us posted on your progress.

  • You can always go back - click on the righthand box with the little arrow and it will give choices of Edit, Delete and Report.

  • Hello

    I am sorry to hear what an awful time you have had, but am pleased you have an excellent GP. I hope that you find that you don't have GCA, but am sure you will find excellent support on here if you do.

    My journey to diagnosis has been convoluted, too. My inflammation markers were not raised. My GP thought I had fibromyalgia so had to delay referral until I had had symptoms for over three months and so I had had symptoms for almost six months before I was seen by an NHS Rheumatologist.

    The analgesics and anti-inflammatories I was taking were ineffective and so I decided to see another Rheumatologist privately. He diagnosed arthritis and left me Β£200 lighter!!!!

    The NHS doctor diagnosed PMR and the Prednisolone which made a rapid 'miraculous' difference.

    However, I am rather upset that I lost almost six months earnings (cannot claim sick pay), paid Β£200 for the wrong diagnosis and have taken sooo many unnecessary, and potentially damaging, tablets.

    On the positive side, I am so relieved to be pain and stiffness free and am now working two half-days per week at the moment and life feels much more normal.

    I hope that you will soon be able to say the same thing.

  • Hi Im sorry youve had rough treatment up till now. I also was misdiagnosed twice for GCA until my fantastic GP took one look at me. He did the bloods there and then. I had an ultrasound the next morning and I could see on the screen the inflamation in the artery. I hope all goes well with you from now on and yes keep a hold of that GP it is amazing with so many cases that some GPs and Rheumatologists missed these classic symptoms

    Take good care of yourself and good luck

    Christine

  • All these cases of misdiagnosis and hassle, worry, stress and pain, leave me speechless but unfortunately not surprised. So pleased you now seem on " the right track" and that your GP seems on the ball. Do keep us updated on your progress.

    Jackie x

  • Hello-

    What an awful time you have had - am so sorry, but hopefully you are now on the right path and going forwards with the correct diagnosis-medication, we literally put our lives into the hands of these "specialists" - presuming they are ALWAYS right - and pay dearly for errors that are not of our making - I wish you to feel better soon, and that progress will continue.

  • Hello everyone

    Firstly thank you for all your lovely supportive messages and well wishes very much appreciated.

    Update:- after a terrible night hardly any sleep from worry, I saw my gp this morning, she was thrilled to tell me in her opinion it isn't GCA as my ESR is raised but not at a worryingly high level. She has advised me that she has no doubt that we are dealing with PMR and she expressed how sorry she is that I have just gone backwards 3 yrs due to the Rheumy, very sweet of her.

    Anyway she also said she is very reluctant to refer me to another Rheumy, as she also has lost all confidence in a confirmed diagnosis from them and she doesn't wish to cause me anymore trauma!!. So her suggestion was to start at 20mg of pred, stick to the for 1 month and then repeat esr. As she said if things improve which she is confident they will then that's proof enough. She repeated this morning that Fibromyalgia as a diagnosis would not respond to pred.

    So although I've had a double whammy of 40mg for 2 days 😏. However amazingly I feel that my pain has decreased already compared to the last 6 months.

    So here is hoping that this is the start of the right way forward (again) .

    Here's to pain πŸ†“ πŸ™ x

  • There are people who feel that a few days of a high dose does help to clear things before you then go to a more normal PMR dose. My pain decreased on 15mg in 6 hours - and I can still remember the difference after nearly 8 years! Enjoy feeling better!

  • It's quite amazing isn't it. I could actually touch my temple this morning without the bruised pain and my thumbs are working today!!. Thank you, just hoping it continues to improve.

  • Hi

    As I said keep in touch with your GP a great ally. She knows you and it helps enormously with this rotten illness.

    My very best wishes and as my lovely mother in law used to say (geordie accent coming up) ' Keep a had hinney' Translated - keep everything held together my dear.

    Regards

    Christine

  • Hi Christine

    Awww thank you ☺.

    Well this is the thing your gp sees you on a more regular basis especially with this condition and its ups and downs, but "specialists" see you once in a blue moon and just read notes about you!! .

    Take care too

    Wendy

  • I'm so pleased it's not GCA & that your GP is confident it's PMR & happy to treat you. The couple of extra days at the high dose won't have done you any harm, if it'd have been me, l'd of just been the high side of 'normal' it will have given the inflammation a bit of a hit too. So steady at 20mg for a month is the way forward, you'll soon feel the improvement.

    A bit of advice, put what has happened to you on the back burner for now & allow the Pred to do its job without any additional stress & make a decision in a couple of weeks if you are going to go forward with a complaint. You really do need to regroup, get your head around the proper diagnosis & we're all hear anytime you need us. πŸ’

    Take Care

    Mrs N x

  • I'm just relieved Mrs N that I'm on the path to hopefully feeling better ☺.

    And yes as much as I feel incredibly let down and the moment now my anger has subsided I'm not sure I'm ready for a good fight yet!!

    My health is the first priority.

    Thank you 🌸 x

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