tapering down and had to go up again

[Paperroses]

Not sure how I should feel .Had PMR since May 2019 . Was at 20 mg. Gradually went down to 7mg for the month of January and got extremely stiff. thought I could wait it out but things got worse. I went up in .5 mg steps to 10. Been on 10 for 5 days . I hate to go higher but legs are very stiff in the morning and of course doable by afternoon but not great. I don't know if I should go higher to feel really good or wait this out and see if it gets better or will the inflammation get worse if I don't go high now? Never have been pain and stiffness free. Only tapered down when I was at a comfortable level.

[PMRpro Ambassador]

The mistake you made was to creep up - had you immediately added 5mg to the dose where you flared and stuck there for a week you would probably have cleared things out and been able to drop back to 8mg and be OK. So that suggests to me that12mg is where you should be while sorting this out and the place to start.

Then the question will be is whether this is a flare because you overshot the dose you were looking for (the lowest dose that manages the inflammation) or whether this is a ramping up of the disease activity which can also happen.

[PMRCanada in reply to PMRpro]

This is the mistake I made responding to my latest flare 🙁 The other two times I flared I did a pred burst of 5mg higher and tapered down my dose over 10 days. I was then back to virtually pain free and my former dose.

This past January I discussed my overall health at that time with my GP, and I was feeling great for the four months prior. He told me my ESR and CRP were at the top of the normal range. I shared my plan to taper in the coming weeks/months as I’ve been “stuck” around 10 mgs for a year.

Sure enough, when I introduced just one dose of 9mg from 9.5, the pain in my shoulders and between my shoulder blades started. I left it about a week, to rule out pred withdrawal, but pain and stiffness increased.

Instead of my usual pred burst response I slowly went up each day and got all the way to 13 before I felt relief. Stayed their a couple of days and then tapered back down to 10.5mg. I’ve been sore and uncomfortable since (sigh). Probably will go back up to 13 or a bit more and stay there a few weeks to mop up the inflammation.

Lesson learned....don’t dig in your heals when flare occurs. Or slowly add to your dose in small steps. I just ended prolonging the process of addressing the flare/inflammation, and ended up at a higher dose that didn’t provide the same relief in the past. If your blood markers are accurate and reflective, use them to try and avoid potential flares. If they are on the rise, do not taper. Start with a 5mg increase and gauge from there then taper back to previous dose that provided relief of symptoms.

Thanks for your response PMRpro...I needed to read that!

[CSMM in reply to PMRCanada]

You have just answered my question today I’m really struggling after reaching 11mg why oh why did I not nip it in the bud 😩 just learning that’s why anyway took 15mg at 3.30am and hoping to get on top of the pain the next few days then work my way back down .... how I hate Poly she’s a complete Bitch oh to have our life’s back to normal 😕 tired sore and fed up again .

[Paperroses in reply to CSMM]

I went back up to 12mg all week and after a few days finally feeling better again. Next time I taper I will do the slow taper everyone here is talking about.

[HeronNS in reply to Paperroses]

But you shouldn't need to do the slow taper all the way from 12. What was the last dose you felt well at? If it was 8, you can drop very quickly back down to, say, 9. And if you are okay there for a few days, then start a slow taper to 8 (or 8.5 if you're tapering by half a mg).

[Paperroses in reply to PMRpro]

thank you

[Paperroses in reply to PMRpro]

thankyou

[Paperroses in reply to PMRpro]

I went up to 12 mg for the past week. Felling so much better. I think I will hold to that amount for another week judging from others experience when traveling as I will be out of town at a convention all next week . When I return I will start to taper down again.

[PMRpro Ambassador in reply to Paperroses]

Good idea I think - depends on how long you are on the 12mg, just a week or 10 days and you can drop back quickly.