Flare after 5 years?

[Zhenya]

I wonder if nyone can advise me please. I’ve had PMR since October 2014. Over 5 years I’ve tapered down to 4.5mg pred daily but never been able to get below that without symptoms returning. Last September (2019) when on 5mg I

developed severe shoulder and neck pain plus headache. I increased the pred to 10mg and things improved slightly. My rheumatologist thought it was something other than a PMR flare and prescribed Codydramol. This helped a little but made my head feel very strange and foggy. I had an MRI scan this week and am due to see the rheumatologist at the end of next week. Meanwhile I am in considerable pain, which has now travelled down the tops of both arms. My GP has prescribed Tramadol until I see the rheumatologist. It helps a little but makes me feel like a zombie and I also hate taking it as it is an addictive opioid. My question is....could this be a flare that needs 15mg pred as I took right at the beginning 5 years ago and which worked? Both the GP and the rheumatologist seem to be of a mind that by now I shouldn’t have PMR but can it come back with a vengeance after all this time?

[DorsetLady PMRGCAuk volunteer]

hi,

Has anyone considered GCA or osteoarthritis of the shoulders? or even a combination of both? Sometimes a bit difficult to tell what is what.

Although painkillers should help if it's OA or something other than PMR, and Pred the PMR, but if it's GCA the doses you are talking about will not be enough.

Although you might expect PMR to be gone after all this time, its not necessarily so - just ask PMRpro!

Please keep us informed.

[Zhenya in reply to DorsetLady]

Thank you Dorset Lady.

GCA was considered by the rheumatologist and then ruled out at the beginning but I think the idea of the MRI scan was perhaps to look for OA. I guess I must wait until I get the result from the rheumatologist next week. The fact that the Tramadol does help makes me think it can’t be exclusively PMR but I’m sure it’s still there!

[PMRpro Ambassador]

The underlying cause of the symptoms we call PMR last as long as they last - and even if you manage to get off pred altogether it can return months or years later. I know 2 ladies who had PMR, got off pred in about 3 or 4 years and then had another episode, which was totally different, about 5 years later. Another got of pred and about 5 or 6 months later the familiar pains reappeared.

It going away is not a cure, never to return, it is remission - a very different thing. I have had symptoms that fit PMR with no sign of anything else, yet at least, for 15 years. For 5 years it was beyond the wit of GPs (and a couple of rheumies) to diagnose (OA was the considered opinion of one on the basis of "I can feel it", no sign of that with imaging 13 years later). It flares up at intervals for various reasons - just having a major resurgence at present, probably stress.

[Zhenya in reply to PMRpro]

Thank you PMRpro. It helps to know I am not alone.

[PMRpro Ambassador in reply to Zhenya]

In this community it is unlikely that anyone is alone in their trials!

[suzy1959]

Like PmrPro, I have had PMR for much longer than 5 years and never able to get below 11mgs pred. I have flares quite frequently due to my OA pain, post-operative pain, stress and also if I try to reduce!

I think it could well still be a flare if you haven’t fully knocked out the inflammation yet. Have you had blood tests to check your inflammation levels? This can be helpful in confirming a flare( if your markers do go up and down) and thus indicating what to do next.

At the moment my CRP is 20 (down from 30 in November which preceded a nasty flare), but I have been able to get back to 11mgs without too much trouble.

Nothing is really exact- we often have to take educated guesses!!

[Zhenya in reply to suzy1959]

My markers never indicated that I had PMR but I gather that is not unusual. When you say you have been able to get back to 11mg what had you gone up to?

[suzy1959 in reply to Zhenya]

In the past I have had to go back to starting dose many times, but now, my Rheumatologist has given me vials of Depo-medrone that my local practice muse can inject as this is an easier way to overcome the flare, avoiding changing my oral dose. This last time I had to increase my oral dose as well to 13mgs as it was a big flare!

[piglette]

If Co-dydramol and Tramadol do not work it is probably PMR causing the problem, if they do work it probably isn’t. Have you increased your pred? If not it sounds like you should up it say 5mg for a few days, see how it goes then reduce again if things are OK. You could mention this to your doctor.

[Zhenya in reply to piglette]

I am tempted to increase from 10mg to 15mg because it was 15mg that relieved my PMR symptoms 5 years ago. It seems such a retrograde step though, and I will try to hang on until I see the rheumatologist next week. Thank you for your advice.

[Hunter134]

I was in remission for nine years and it came back with a vengeance.Had to go on 15 mg of prednisone.Stress i believe caused the flair.

[Zhenya in reply to Hunter134]

Thank you. That’s very interesting.