I've posted some background before about my OH's situation, but there's alot of us here, so I'm providing some background again before asking for advice/comments/. Sorry for the long post!
My OH is 66, and had classic symptoms of PMR for three months, starting June 2018, - severe and debilitating bilateral pain in neck, shoulders & upper arms, less severe pain in hips. Just days before the onset of the pain, he had severe pain in his right thigh, he thought he had torn a muscle. It was far worse than any other pulled/torn muscle he's had, he is (was!) a regular 5 a side football player and has had many - he couldnt lift his leg up without the aid of his arms. An ultrasound scan showed it to be a bag of unknown fluid (bursitis or synovitis) which the GP said couldnt be drained as it was between a main artery and nerve.
No intervention helped at all with the pain in upper body - osteopath, chiropractor, physiotherapist and massage every day (by me). He had the ESR CRP blood test - it was normal.
Previous to all this he had lost weight (2 stone in about a year) and had had pain in shoulders for about two-three years - which he had put down to a frozen shoulder.
He then developed symptoms in early October - three months after severe upper body pain, that could have been GCA (headache, sore and pressured temples, blurry vision), which led to the suspicion it might be PMR/GCA despite no inflammatory markers.
His GP started him on pred at 50mg, and referred him to rheumy, but didnt get an appt for three weeks. The pred did its magic. From being unable to get out of bed one day, to minimal pain the next. Over the next few days, the pain more or less disappeared completely.
Fast forward three weeks. Rhemuy did more tests (bruits, peripheral pulses and subclavian steal) which all came back normal. As a result of this, rheumy is not convinced it is GCA at all- good news. But neither is she convinced of PMR - "PMR is a possibility with his symptoms although things are complicated by having had the right thigh injury". She suggested he reduce to 40mg immediately, then reduce by 10mg every 2 weeks till he reaches 20mg and then will see him again. He did three days of 45mg before reducing again to 40mg for 8 days, and has today reduced to 35mg. So tapering is slower than she suggested, but I insisted he did it more slowly after reading everything you've all shared. I understand she wants it down fast because she thinks its not GCA and therefore on high dose pred un-necessarily.
He still gets pressured temples, sore scalp, and blurry vision. He's now getting pimple like spots on temples which are itchy and very sore to touch.
I can't understand why the diagnosis for PMR isnt clear cut. It seemed to me to be classic symptoms of PMR, especially when they disappeared, miraculously, the day after taking the pred. As far as I am aware, nothing else responds so quickly, or completely.
Where does this leave us? If its not PMR, what is it? What about his visual symptoms?
Has anyone else experienced this uncertainty?
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Funky-Butt
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I should have read a few more posts before I started this one shoudln't I! I would appear many of you have this same issue, even after years of symptoms -( isn't that right Daisychain?!) Aaargh! How frustrating is it!!
I was about to say - probably most of us!! PMR isn't the disease, it is the symptoms of something underlying them. In our case it is an autoimmune disorder of some sort - but even that isn't certain and HOW it causes the problem isn't clear. Other things may be involved.
When they are not entirely convinced, it is difficult to see anything when the patient is already on high dose pred - which is part of the reason I was so keen your GP should use the phone to QE and get an emergency consultation rather than taking matters into their own hands. It happens quite a lot that patients are told to get off pred so the doctor can see the unadorned result and after 3 weekson high dose pred the ultrasound test may be compromised - I assume she has done one? They can do it at QE as far as I know. There are other things that will respond to high doses of pred - PMR and 15-20mg is one thing, 50mg is a very different matter. There are even a couple of things that can cause very similar symptoms to GCA that will respond to that sort of dose.
Now she is the expert - but I'm confused as to why she's saying not GCA because of no bruits, subclavian steal, pulse problems - I always thought they are things for a differential diagnosis. Or have I misunderstood? What other tests has she done?
Thanks, that helps! We did try everything to get him a fast track appt - except rocking up at A&E. Even rang the QE and spoke to the rheumatology nurse, who said it wasnt possible to get a quick appt.. There's definitely something wrong with the joining up of NHS services.. the left hand doesnt know what the right hand's doing..! but then again, now that they've carved up the NHS what more can we expect.. but that's another axe..
No she didnt do an ultrasound. I think because it was too late.
It may be me who mis-understood the letter re other tests, I interpreted the normality of everything else was relevant to it NOT being GCA.
The letter says "on clinical examination there is no lymphadenopathy, chest auscultation was clear, no bruits, peripheral pulses were all intact, no evidence of subclavian steal.
Blood tests show ESR of just 2mm/hr, normal CRP, white cell count slightly raised in keeping with being on steroids, gamma globulins decreased secondary to steroids, protein electrophoresis of serum and urine negative. CHest X-ray shows multiple opacities of between 1 nad 4mm but seem longstanding. Cardiovascular examination reveals pulse of 80 beats per minute, heart sounds seem pure and there are no obvious masses. Clinically the picture is unclear".
She is arranging an echocardiagram and screening for malignancy. (She said just to rule anything nasty out).
I feel alot better knowing that its quite common to not have a definitive diagnosis.
I'm so grateful for this forum and to everyone who shares what they know.
I would get to a different Rheumatologist and get a second opinion. Doctors often throw medication at symptoms without clear diagnosis. It took several months and several doctors to diagnose my GCA with the use of an MRA Scan, and even with that test they weren't 100% sure. It actually took performing pathology on my heart valve once it was removed and replaced. From what I was told by a few doctors is that pathology is really the only way to confirm GCA (not sure of PMR).
For several months I couldn't get answers because all the doctors didn't know a thing. I was guilty of being a "google" doctor for my symptoms and the more I studied it and tried to self diagnose the crazier it made me. I finally had to stop and put the computer away. I have learned that Rheumatology needs a lot of patience diagnosing most illnesses and they know little about them. Causes, diagnosis and treatment can be very frustrating. Finding a good rheumatologist can be even more difficult.
Go after a second opinion and be patient is my advise. Be careful with advice you get off of forums and groups.
I was implying not to take medical advice which I wasn't giving. I am suggesting a second expert opinion that has actually examined them and seen them. That is all.
I would agree about not being a "google" doctor (many sites have an axe to grind, or a product to sell), but some of us on this forum in particular who do have the t-shirt may be able to give non-medical advice!
Thank you GCA_Patien, I agree with you that being a google doctor can make you a bit crazy! I'm lucky enough to be able to be discerning about the articles/comments I read and can assess the integrity of those writing them. I also know after years of working with people that even GPs and Rheumatologists are still human beings, with their own beliefs, values and interests that inform how they interpret and respond to their world. My strategy is to listen to everyone, and try to get an idea of where each voice has come from. Everyone has something important to offer. Its up to me to decide what to take, and what to leave. Thanks for your advice, I do appreciate your concern. I hope you are managing to manage your own condition now too.
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