New here, and so VERY glad to find you all. I developed PMR following a Quadrivalent flu shot last October and have been reducing my prednisone slowly, until two weeks ago when I developed terrible neck pain. It wakes me about 2 am and does not go away util I get up and stretch and exercise it. The fatigues is the worst of course.
I had a neck xray which did not show anything too drastic-some bone thinning and minor arthritis. Could it be GCA? Of course I am asking you ALL to be Doctors here. I hate bumping up the steroids, yet am NOT anxious to go blind.
Thanks of any words of wisdom.
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Cookiekelly
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You will get some more advice I'm sure but I have a few questions.
What dose of Pred are you on?
What sort of pain is it? Is it in a very specific place? Does it radiate anywhere? Does it hurt to touch or move in certain way?
Was a normal X-ray don for the neck? My understanding is that it isn't the most accurate way of determining amount of bone loss which might need to be more than a bit to show up.
With my GCA, in hindsight, all my early symptoms showed up at night and morning before I got up and moved around. The neck pain was just a niggle from the base of the skull to mid neck like a small muscle running down to one side of my spine. Massage was no help. It became more widespread right in the base of the skull when the GCA took off. Others on here have reported more severe pain. Are there any other symptoms in the head, eyes or elsewhere?
If it is GCA and the steroids need to be increased, I would say you need medical advice before you do so as the dose needed is high.
AliDe here. Do you suspect the Quadrivalent Flu jab for triggering your PMR? I had a tetanus and a flu jab on the same day, then went down with PMR soon after.Does any one know if this is a possibility?
SOMETHING eventually overloads the immune system and it goes haywire, developing an autoimmune disorder, in our case PMR. However, there is no one thing that will lead to the autoimmune disorder, it is a litany of attacks over many years and eventually a straw breaks the camel's back. For some people it is severe stress that finally upsets the immune system, for others it may be an infection or trauma (both forms of stress if you like) but there is no single common factor.
And all of the various stresses will also affect the autoimmune disorder while it is active, often necessitating an increase in pred dose, or even cause a recurrence long after getting off corticosteroids altogether.
So for you two, it may well have been the jabs that finished the job - but your immune system was almost certainly already overwrought and waiting to go mad.
I am in the US and PMR is listed under their possible reactions to the flu vaccine. I became ill within 24 hours, my symptoms finally settling into PMR. I agree that we are all a combination of events And of things that we can our immune system. I am certainly not an anti-vaccine person, but do believe that this was my straw that broke the camels back.
I think you should ask your rheumatologist about this.
Night pain that appears at that sort of time is characteristic of ankylosing spondylitis (PMR pain tends to be later in the early morning, about 4.30am) and the two are easy to confuse. There are at least 2 people on the forums who were initially diagnosed as having PMR - and who now are being managed as AS. One happened to mention to her new PMR expert rheumatologist about the night pain - which resulted in an MRI and a dx of AS. The other knew from the outset it was something more than "just" PMR and she kept her search going until someone diagnosed AS with a Behcets crossover - very rare. The difference matters - while pred does work to a degree, AS responds far better to the anti-TNF biologics and there is a choice of 5.
What is also characteristic is that the pain is eased by exercise. That is only true for PMR to a certain extent. An ordinary x-ray doesn't always show much - an MRI is needed and they need to be looking for it, like most scans!!
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