annoying - remission undone… 🤨

[spikyPMR]

my consultant told me I was in remission, I’d been one 1mg a day, then 1 mg every other day - (this taper over several months) symptom free went to Portugal for 5 days and unknowingly took an empty box of Pred but no symptoms, no flare - after return my son got very ill with glandular fever and I had a covid jab.

Shoulder pain returning

research suggests the Epstein Barr virus and Covid vaccine can be triggers for PMR….

anyway upped to 1mg a day - to see if it goes back into remission. It’s not pain like it was on initial diagnosis and I still can do most movements.

[SnazzyD]

I hope you had some pre-respite in Portugal! Nobody can say you are in remission until you have had a number of months completely Pred free with no symptoms unfortunately. I know some docs think 1mg Pred is insignificant but many will attest that it turns out it can be plenty to hide inflammation.

Any trigger to the immune system can cause PMR, vaccines and diseases included. It is an annoying fact but more annoying is that it is unpredictable. How long ago did you have your Covid jab? Normal side effects can be muscle pain for up to a week in my experience.

Perhaps for good measure and being the time of year it is, do a proper flare protocol.

healthunlocked.com/pmrgcauk...

Then, after that, although 1mg alternate days seemed to suit you, it might be worth going to half mg per day to smooth the withdrawal slope.

[PMRpro Ambassador]

Snazzy has said exactly the same as I was going to - won't repeat it!!

Did you go straight from 1mg on alternate days to stopping or did you extend the days without between doses? Even 1mg once a week can keep the inflammation due to a very low disease activity under wraps for quite a while before it catches up! And disease activity does seem to vary over time - I think if you could plot it on a graph it would form a sine wave and if you are on a downward phase in your taper you get on OK - but then it may increase again and upset your plans.

[Perigrina in reply to PMRpro]

Sorry to go slightly off topic but I was very interested in your comment about 1mg a week. It seems an important point. As I understand it we have PMR until it goes into remission (at a timetable not of our or the medication's choosing) and so may always have some aches and symptoms, with which we can live, after coming off pred. Something like 1mg a week to help us through (by preventing the symptoms worsening) sounds useful and with fewer pred side effects/ consequences I would be interested to hear more of your thinking.

[PMRpro Ambassador in reply to Perigrina]

Personally I think if you get to a low dose - 3mg or less - it is definitely worth any doctor stopping insisting you get off entirely. And anyone who objects to 1mg per day or less is crackers!!

The comment was more directed at the fact that people using a tapered plan here may well end up taking 1mg every few days - and even that little can be scooping out enough inflammation to prevent the bucket filling up and overflowing. But you would be surprised how many doctors think even 1 or 2mg a day "can't be doing anything".

[Perigrina]

Thank you!