Flare or relapse?

[Nightingales]

Hello everyone. I am here on holiday in Norfolk and my holiday jinx has proved true again as we have hailstones! So I thought I would take up your time to ask you what is confusing me as I am sure you have nothing else to do 🥴I have had PMR for 7 years in August, with twice getting to 3 mg and then having a full blown relapse going back to the starting dose and long taper. This time I got to ten OK and stayed on it for seven months as my symptoms and blood tests recovered. I started to taper 1/2 mg every month for two months. My dr tests every two months and sure enough my ESR and CRP have doubled and I can feel it in the deep aches. He put me up to 12.5mg

My question (eventually🙄.) is can I treat this as a flare and taper fairly quickly back to 9 or should I do a very slow taper from 12.5.? I am on gastro resistant.

Thanks in advance for your excellent advice. After 7 years you would think I know but PMR is so clever at throwing curveballs at me.

[PMRpro Ambassador]

This was a topic of lively discussion at a meeting I was at last night! What is a flare - relapse, recurrence, reactivation and a whole load of other R-words They seem to be used interchangeably and doctors understand one thing - we understand another. I think a flare is just a word to say you have symptoms again but there are various underlying reasons for that. PMR comes in different versions and why you are having symptoms again can be for differeing reasons. Whatever they are - you aren't on enough pred at that moment in time.

I think it depends on whether you overshot the dose you were looking for and uncovered the stored inflammation somehow or whether the disease has changed in some way. Overshooting the dose while the disease activity is fairly stable is relatively easy to deal with: you go back to the previous dose that worked and stop for a while or slow down. If that doesn't do the trick, you take 5mg extra for a week or so and then go back to the last dose that worked. That usually works.

But you can also have an increase in disease activity - same effect, you aren't on enough pred to deal with it and you have to go back up the dose. It is almost like starting again and you won't know what dose you will need now.

I've had both - and now I have had at least 4 proper relapses without ever having got down to zero pred. I was under 5mg once and I suspect the underlying cause of the PMR was pretty inactive at the time - but it woke up. That flare was relatively gentle in onset and very like the PMR developed originally. I have also had some traincrash flares - suddenly overnight unable to move without severe back pain and some different features to it all. I think there is a close link between PMR and myofascial pain syndrome, both caused by the same inflammatory substances but some systemic, some more localised. And when the overall disease activity shoots up, you are pretty much back at the beginning.

I don't suppose that is at all helpful - because it all comes down to identifying which you are experiencing! And THAT is the problem isn't it?

I wonder if this is an overshoot already - and I suppose you have to try it as that first step. If it works, back to 10mg in the end and then start the slow taper again there. If it doesn't - you need more time at 12.5mg.

[Nightingales in reply to PMRpro]

Thank you so much for your reply. I am sorry it took a while to answer. I am trying to enjoy my holiday. I thought the 12.5 would make me feel lots better but it hasn’t. I think my GP was right when he said the PMR just hasn’t gone. I think there is something else going on in the background. I am waiting for the results of a breast biopsy that has taken nearly a year to get. It’s a mystery to the Dermatologist and my rheumatologist isn’t interested. I recently read that you can get GCA of the breast. It’s so difficult to tease out because of osteoarthritis as a lot of us know. Thank you again. I have repeat bloods in two months so I will reevaluate then. On top of all this my beloved GP has the audacity to retire!

[PMRpro Ambassador in reply to Nightingales]

Well that's not good enough is it! Though to be fair - can you blame him?

Don;t worry - I don't expect an answer straight away unless your original question was an urgent one - like "I might have GCA, what do I do?"!!

[123mossie]

Hi Nightingales, everything that pmr pro has said - I would only add that you could try a much slower taper, 1/2mgm 6 weekly, and remain there for at least a week before the next taper. Hopefully you’ll detect the slightest sign of flare/relapse/recurrence earlier & be able to nip it in the bud.

[Nightingales in reply to 123mossie]

Thank you 123mossie. I think you are right, slower taper it is for me.