Flare protocol question

[Italybound62]

I guess this question is for DorsetLady as I have a question about your FAQ:.

I have a question about how to handle a flare after trying your method.

----

Cut and paste from FAQS:

EXAMPLE - if you flare after dropping from 9-8 mg, but were okay at 9mg -

Go to 14mg .......get symptoms under control - then drop back to 10mg .....and continue tapering schedule.

-----

what is recommended if after doing the above, and then when dropping to 10mg, the flare still remains. Then what?

so just like your example:

flare at 8mg. 9+5=14mg

stay on 14 mg for 7 days. drop back to 10mg.

what if at 10mg, the flare immediately returns? How long should one wait at 10mg to see if flare goes away? or maybe not wait at all?

if still flaring at 10mg, which mg strength should we switch to next? Go back to 4 mg ? or try 11mg?

I'm sure you've explained it but I'm not clear.

Thank you so much!.

[DorsetLady PMRGCAuk volunteer]

Just clarify if you will please-

What dose did you flare, what dose up to and for how long, and how did you drop back down?

Sometimes the increased does needs longer than 7 days - you can stay on it for up to 14 days..

If the first time didn’t work you may need to try it again.. but do tell me what you did…

[Italybound62 in reply to DorsetLady]

okay, sorry I was trying to keep simple for you.

I was tapering from 4mg to 3.5mg to 2.5mg to 2mg since March (because my Rheumatologist actually wanted me to completely stop Prednisone and go from 4 mg to 2mg to 0mg in a matter of a month (I know!), because my labs have been perfect for 1 year+ and I was looking so good, she was convinced I no longer had PMR. I decided to taper somewhat slower than her recommendation, even though this is faster than my usual taper.

anyway I began not to feel right already at 3.5mg but thinking it was steroid withdrawal or osteoporosis or something else, I continued to slowly taper. Now I am at 2mg and the pains are spreading and getting worse to the point where it is worrisome and impacting quality of life.

so my thought was to go up to 9mg and stay there for 7-14 days and then drop back down to 5mg.

I'm planning ahead and wanting to know what to do if I don't feel good at 5mg. but maybe I should just wait and see.

[DorsetLady PMRGCAuk volunteer in reply to Italybound62]

Okay .afraid your Rheumy can’t say your PMR has gone just because blood are okay -but you know that..😊. You need to get to zero and be symptom free for weeks if not months until you can say it’s gone.. but guess you know that as well 😊

Would say that maybe issue started at 3.5mg - and sometimes it is difficult to know especially when being hassled..

So agree -up to 9mg - get things back under control and then down to 5mg. You should be okay there -but wait and see..

You have to do what’s best for you- and only you know that. Rheumy might get angsty about it-but it’s not her illness not her pain..

so just smile sweetly, nod your head -and do it your way😊

Good luck

[PMRpro Ambassador]

Cross the bridges when you get to them is my motto!! No point worrying about what may never happen.

As you well know, being fine at 4mg doesn't mean you will be fine at any lower dose - until you try it and ARE fine. When you try a lower dose and "don't feel quite right" that is your body suggesting you stick at that new "is it OK" dose and don't try to taper any further until you DO feel OK which will happen sooner or later if all it is is the adrenals. If it gets worse - you know it is the PMR raising its head again and you need more pred.

I do wish rheumies would learn that the patient looking fine is NOT a pass to rushing in like the bull in the proverbial china shop. The primary aim is to identify the lowest effective dose and with a sensible approach like we use, you will identify that pretty accurately and can be poised on a knife edge. Messing about with that is risky if you don't carry on in the slow careful way you got there. To suggest to anyone who has been on pred a long time that they drop from 4 to 2mg in one step is crackers - whatever anyone thinks. Softlee softlee catchee monkey ...