Following a rapid onset of symptoms , arms, neck, shoulders, thighs and posterior pain and stiffness, difficulty getting out of bed and dressing, awful fatigue, attended urgent care. following examination and history taking the Dr was certain it was PMR (I had never heard of it). She offered steroids but did say that blood tests would be helpful wanting me to attend A&E that night. . How I wish I had taken the steroid prescription but at the time thought it best to be certain. Triage at A&E palmed me off but I managed to get to the Ambulatory Care Unit for tests and further assessment. Dr thought PMR, blood tests were inconclusive, C Reactive was elevated, 26, ESR not, 1. Appt with consultabt 2 weeks later with more blood tests in between, CR still elevated but down to 12, ESR up to 19. Lung XRay clear. Consultant not happy to prescribe, wanted to wait and be sure. Appt made for 6 weeks hence, more tests. Now I have really deteriorated with 2 days so wiped out unable to do anything. Have had to stop all volunteering activities. Unable to do much at home, husband has Parkinsons so relies on me to do most things.
Decided to book a private appointment with a local specialist, Professor Tahir this week. Asking for any advice on how to manage this appointment, if he prescribes should care go to GP for continued management or my NHS consultant. Feeling a bit desperate atm.
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Fatsiajaponica
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"Wanted to wait and be sure" - they obviously haven't a clue about the effect PMR can have on a patient. The rheumy I saw wasn't convinced it was PMR despite a miraculous response to 15mg pred in under 6 hours! However - he did offer me a 6 week taper to get me through a business trip to the USA. Once the tests are done, there really isn't any good reason to withold a trial of pred for a patient with a lot of pain and disability.
It is a difficult one - it can result in a bit of a stand-off between specialists if the NHS one decides to be miffed at being disbelieved and overruled. The problem will be that the private guy will have no access to those test results. All depends how precious the NHS one decides to be.
Unfortunately it was an emergency Dr not my own GP or I definitely would. I'm taking all the blood test results with me so he will be fully appraised of my situation. Thank you for your reply, yes, the mental health side of this illness and it's impact on your life does not appear to be considered when one has an extra cautious consultant. I appreciate her carefulness but in the meantime my life has become very limited and unmanageable at times.
I would say that the symptoms you describe at the start of your post are clearly indicative of PMR and I’m sorry that you didn’t accept the initial recommendation of steroids. I’m not nagging - I understand your wariness; no one wants to take medication if not necessary. I also understand your frustration at no diagnosis and I feel you have been repeatedly fobbed off with no one wanting to take responsibility by at least giving you a week or two’s trial of 15mg prednisolone which, if symptoms ease markedly within that time a diagnosis of PMR would be pretty conclusive. I went through weeks and weeks of no medication (just repeated blood tests) during which time my condition, like yours, deteriorated by the day and left me in a sorry state. If I knew then what I know now I would have more or less demanded a prescription for steroids.
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I do. He used to be at Whipps Cross. I think it depends what you go with. He was pretty brutal with me about 7 Years ago when I used to see him and so I stopped going. That was with osteoporosis. Basically told me if I didn't take the drugs I was going to fall and get a spinal fracture and die.... it was about 4 months after my husband died and was a stretch too far for me.
All I can add as a comment is that it was my physio who when I explained my symptoms to her suggested PMR. She told me to tell the doctor her views
My Dr when I explained what the physio diagnosed put me on 15 mg Pred that day and then arranged a blood test which yes showed elevated markers.
I felt less pain within 6 hrs.
My appointment for the blood tests came after my initial diagnosis not before
I hear horror stories about health care professionals fighting against a PMR diagnosis when if it's explained as you say here how you feel it's pretty obvious it is PMR.
The trouble is, there is evidence of GPs (in particular) misdiagnosing PMR because they forget (if they ever knew) that PMR isn't the disease but the name given to a set of symptoms that can have a range of underlying causes which SHOULD be eliminated before plumping for the PMR we talk about here. As many as a third of GP diagnoses are revised later by a rheumatologist. Not that they are always right either!
I'm sorry to hear you are struggling. If I were you, I'd have the continued care sent to both your GP and your consultant if you are happy and confident with your consultant. They should collaborate on this. However, if you aren't satisfied with your consultant, try and get an appointment with another rheumatologist until you are confident with the consultant looking after you.I understand your hesitance at taking prednisolone, however, a couple of weeks trial on it wouldn't do you any harm and could make a huge difference to your life as long as the dose is managed correctly. Once you start to feel an improvement and stabalise, it's generally a good idea to have a reduction plan to get to the lowest dose possible that keeps you on an even keel.
I hope you get some clarification and start to improve really soon. Good luck. X
When I was put on Prednisolone just before Christmas the GP told me that taking it would help with the diagnosis of PMR. That seemed a good reason to take it. So I did and sailed through Christmas on a high and accepted the PMR diagnosis as correct. However, I wish I had been told at the time that I would need to come off it within three weeks or be trapped on it for at least a year. I would have liked the option of finding out whether my body could recover from the PMR on its own.
With regard to stress, one of my stressors was a friend, many miles away, who is getting dementia and was ringing me many times a week (often many times a day) in distress with managing his complicated life. I have now realised that by joining in his anxiety I not only made myself ill but also heightened his anxiety. I now leave him for longer to work on his own problems (do not answer every text and phone call) and he is doing better. When I do listen to a problem or panic I try not to take the anxiety upon myself but encourage him to calm down and find his own resources to deal with it - although I do recognise that one day I will probably have to call social services to rescue him and I have to be careful not be wantonly cruel and neglectful just to protect myself.
"However, I wish I had been told at the time that I would need to come off it within three weeks or be trapped on it for at least a year. I would have liked the option of finding out whether my body could recover from the PMR on its own."
You can in fact stop it easily after up to 6 to 8 weeks - I was given a taper over 6 weeks and was able to stop - but immediately I missed the first 5mg dose I was back in as much pain as before which is typical. Did you try stopping the pred to see what happened? Believe me - almost no-one is able to get rid of PMR in a short time. You probably COULD recover without it, there is no cure, pred is just a management strategy to give you a better quality of life while the autoimmune disorder that causes the symptoms burns out. But it doesn't often do that in a year. I had had PMR for 5 years before getting pred - it never even faded never mind went away, just the pain and stiffness got worse. Six hours after the first dose of pred I could move again.
Thank you for picking up on my reply. Yes after 3 weeks on 15mg of Pred I went down to 12.5mg but still felt very uncomfortable on the medication. Then after two or three weeks at 12.5 ended up in A & E with near fainting and my heart or my adrenals pumping, kind of hot flushes going up my gut, quite scary. I still don't know what that was. My heart probably as it is still fluttery sometimes. I have been desperately trying to get off Pred ever since. Today I am down to 5mg, but there were signs of PMR returning at 6mg, so not sure how this is going to go.
I am also on Thyroxine and thought about reducing that but have decided to try and get the Pred down first then consider whether I can reduce the Thyroxine, as it did seem to be the Pred that precipitated my A & E crisis.
What did the ED conclude? Sounds to me as if you need a cardiac monitor for at least 24 hours, or at least long enough for you to have an episode while on it. Pred can cause arrythmias that you feel as palpitations which can feel a sort of fluttery sensation - but so can the underlying autoimmune part of PMR so it does need ruling out.
Thanks for asking about this. I have had the 24 hour monitor and it did show arrhythmias which my GP thought should be investigated further and I have a cardiac appointment in September by which time I hope to be on 2mg of Pred. I was hoping the arrhythmia would stop when I came off Pred but am now realising that the damage caused by Pred may be permanent damage to the nerves of the heart - or as you say the damage may be partly caused by PMR. 😪
Mine was almost certainly the PMR, I had it long before pred. All arrythmias should be looked at closely, they are very keen about that here in Italy. Mine was identified by accident while being treated for back spasms - and I wasn't let out of hospital until they had worked out what it was!!
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