Flare?

[Swiftandbold1]

Does a flare constitute a return of symptoms or rely on a raised CRP to be sure?

[DorsetLady PMRGCAuk volunteer]

Return of symptoms most definitely.

Raised CRP levels just show increased inflammation in your body - but it can caused by other things not necessarily PMR or GCA.

What have you got?

[Swiftandbold1 in reply to DorsetLady]

PMR plus GCA without temporal involvement plus likely LVV. Started on 40mg pred now down to 20mg over couple months. Been doing well but symptoms reappeared two days ago. Got a taper plan from rheumy and don’t see him again until May.

[DorsetLady PMRGCAuk volunteer in reply to Swiftandbold1]

40-20 within 2 months is too quick in my opinion.

You really need to be on starting dose for 4 weeks, although many tapering plans say half that.

From 40mg did you go 30 then 20?

40-30 was probably okay, but then 30-25-20 would have been better - although that is still quicker that many can manage.

The trouble is with reducing too quickly you are never sure that current dose is truly enough before you reduce again.

If you reduced from 30 to 20 in one go, then your dose could be anywhere in between - and you don’t know where exactly.

Do you have enough tablets to increase your dose to 30mg for a few days to stop the flare? If so, then speak to Rheumy’s office explain situation and say you want to reduce more slowly.

You are not reducing relentlessly to zero - you are trying to find the lowest dose that controls your symptoms - and you need to do that more slowly than you have been advised to, otherwise you overshoot your required dose.

With GCA you need be be aware that flares easily happen within the first six months whilst it may not fully controlled.

[Swiftandbold1 in reply to DorsetLady]

I actually started with 15 but did not get the required pmr response I.e. feeling better after few days plus crp up and down. Up to 40 then two weeks later down to 30 then two w eeks later down to 20. Then down to 15 end of this week (after another two weeks ) actually been ok until this weekend. Will ri ng rheumy as GP not very helpful once past the protocol for pmr! I’m actually a retired nurse and worked on rheumatology but didn’t see patients on the wards it’s usually an outpatients job. Interesting situation. Our ANP at the surgery suggested I had pmr not our GP. Good for her !

[DorsetLady PMRGCAuk volunteer in reply to Swiftandbold1]

Okay, let’s us know how you get on please.

[Swiftandbold1 in reply to DorsetLady]

Will do thanks .

[Swiftandbold1 in reply to DorsetLady]

Not sure if this is the place to update after a gap. Speaking to rheumy later as down from 20mg to 15mg over past week and def not working. Symptoms back plus nausea etc so prob also due to pred reduction. Their plan is methotrexate add in which is I don't have an issue with but wonder if we've been trying long enough to sort pred dose. 30mg was lovely! Also random thought - does anyone ever actually get stuck on higher doses as they just cannot reduce? Thoughts please.

[DorsetLady PMRGCAuk volunteer in reply to Swiftandbold1]

Will answer your post...best way to do is raise a new post, as you have, then everyone sees it.

[PMRpro Ambassador in reply to Swiftandbold1]

If people are stuck at a really high dose despite sensible approaches to tapering then the first thought should be "Is the really PMR?" But mostly it is because they are attempting to reduce the dose in too large steps or too quickly.

[PMRpro Ambassador]

A flare is a return of symptoms - some people never have a raised CRP in the first place, others don't develop a raised level while they are on pred for some reason and for others it lags behind.

That reduction is far too fast and the steps down are far too big - 5mg at a time is more than enough. And you need at least 3 weeks at a dose to be sure it is still enough.