I had PMR in 2023-24. I was fortunate, and successfully ended my prednisone taper on April 1 (it just seemed a good day to stop!).
Over the last week I have developed severe neck stiffness. The pain level is starting to approach the original PMR pain level. I do not have significant pain elsewhere.
I suspect that this is some sort of muscular skeleto injury. However, if anyone with PMR has experienced a similar issue, I would be grateful to hear about their experience.
I am on 4.5 mgs of Pred and get periodical bouts of pain at the base of my skull and my neck. I need to support my head, my neck doesn’t seem to be able to take the weight of my head. It is very painful. All of a sudden it will stop again for a few weeks. Gentle massage is helpful. My GP has not suggested anything of use. I have Cervical Spondylosis.
I’d say you need someone to examine you to see if they can find a mechanical cause and whose bread and butter work is function rather than inflammatory disease. Looking back, did it start after some activity you might have over done? Have you taken care of strength and posture since stopping Pred? Any other niggles of any kind elsewhere?
If you had PMR for only a year or so before stopping pred, the chances are that it wasn't fully in remission when you stopped. Even very low disease activity produces a small amount of inflammation and it builds up slowly over time until it can cause symptoms again - just like a dripping tap will fill a bucket and overflow if left long enough. If you stopped pred in April that is almost 6 months for that inflammation to build up and we have seen that quite often.
It is possibly an MSK injury, neck problems are often related to the sternocleidomastoid muscle, but I think you must also consider it COULD be PMR. Not again, because it never actually went away. One mg can be loads to keep it under wraps - zero pred is a step too far. And PMR doesn't always appear all over immediately, you notice it where the inflammation is worst.
I've had PMR for over 6 years, around 3 years ago I got down to 2mg and started to experience a stiff neck. Gradually my overall stiffness increased and my inflammatory markers rose and I ended up increasing my prednisolone to 5mg. My symptoms improved at this dose and I stayed there for a year. I am now tapering very slowly down from 2.5mg to 2mg and I am now experiencing a stiff neck again. I realise that my situation is not the same as yours but I suspect that even after all this time 3mg/2.5mg is as low as I can currently go.
Thanks all for your comments. I'm going to get my markers tested on Monday morning, and then see the rheumatologist. Not sure if I want the markers to be up (in which case I will have a clear explanation), or down (in which case I haven't yet figured out what I will do?).
I was off pred for a few weeks in 2020 and had to start again but stayed at my then low dose of about 2 mg. A few months later I had to admit my pain (neck!) wasn't osteoarthritis, took 10 mg of pred and experienced the miracle!
Four years later I achieved zero again, and so far, nearly eight months later, all good, but once bitten twice shy, and will not hesitate to call on friend pred in the future if I need to. You could try taking a decent but not too high a dose (10 mg?) and see if it has a quick and effective result.
I was wondering when you had your last blood tests to check for inflammation? Does the pain fo up the back of your head? Is your whole neck stiff or one side?💞
You were off Pred remarkable quickly for PMR and maybe it never really went away. If you still have some, in date, you could try a dose of 5mg to see if it has any effect. If it does you probably have an answer.
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