Temp flare or back for good

[Sanekate]

Hello all. I was diagnosed in August 2021 & gradually reduced from 20mg to 3.5mg pred over the year. I'd been ok on this dose since July 22 though couldn't go lower without problems. I had a malignant melanoma & a big surgery in October but that didn't seem to poke the PMR beast either. Then a couple of weeks ago it came back with a vengeance- all the old pain, and ESR/CRP back up to where they were right at the start. Has this happened to anyone else? I've gone up to 10mg on GP advice and that has calmed it down, but I'm not sure how long to stay on it & what to reduce to. It's complicated by needing to keep pred as low as possible bc it can stop immune system fighting off any residual melanoma re-establishing itself. Feeling a bit back-to-square-one with extra worry. Any pointers?

[SheffieldJane]

Personally, I would do a really gentle taper of half a mg every 6 weeks or so, pausing at the first sign of symptoms. You have been through such a lot!

[DorsetLady PMRGCAuk volunteer]

This link contains info on dealing with a flare - and in your scenario I would reduce in two steps when you are ready to - say 10mg - 6mg or 7mg - for at least a week and then to 4mg for another month before you start your slow taper again. Provided all okay on the way down

healthunlocked.com/pmrgcauk...

Good luck, you've been through a lot, so no rushing things.

[PMRpro Ambassador]

Has anything been different in the last month? Any changes to ANYTHING?

[Sanekate in reply to PMRpro]

No - in fact things were looking up, getting over the op & cancer shock, enjoying work, feeling back to normal!

[PMRpro Ambassador in reply to Sanekate]

Doing too much?????

[DorsetLady PMRGCAuk volunteer in reply to Sanekate]

Reaction to all that doesn’t always come immediately…

[PMRpro Ambassador in reply to DorsetLady]

True - it took nearly 6 months after OH died to hit PMR-wise. Forgot that

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Hmm, yes it’s surprising sometimes

a. How long it takes for the body to react to such things, and

b. How quickly we forget.

[PMRpro Ambassador in reply to DorsetLady]

There are a lot of things I haven't forgotten - or which hit like a brickbat out of nowhere!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

There are some things you never forget……but that’s all about being human I guess..

[Sanekate in reply to DorsetLady]

True. Could be delayed reaction.