Reducing after flare up.

[mikldiamond]

Well it's been a year since I joined this group and you have been my rock. Felt a little guilty at times for when I started Prednisone it was like a miracle and I breezed along with little issues. And then reducing to 9, ESR looking good, BANG back up to 15, even on 15 ESR 56. As I looked back at my journal I see from a year ago, why are my biceps so sore, like I had way overdone a workout. Same now. Same with not severe headache but enough to make you sleep bad on both sides of head. No other symptoms of GCA. Morning fever, feel like crap for first couple hours, yesterday most of the day. OK now to my question. I have taken 20mg for almost 2 weeks, should I reduce slowly or go directly to 15 like I did initially? Many thanks and wishing you all well.

[SheffieldJane]

My instinct would be to gradually decrease your dose ( don't wake the dragon). I think a really slow reduction is more likely to stick dare I say permanently?

We need the patience of a saint. Good luck!

[mikldiamond in reply to SheffieldJane]

Thanks, might even stall off on reduction till symptoms and ESR are in check.

[PMRpro Ambassador]

Up to you at this level I'd say - but via 17.5 might be sensible. And you sound as if you still have symptoms - you need to be sure it is all under control before you reduce at all and I would want my ESR to be on its way down at least if not already back to where it was before.

Those ARE GCA symptoms - and 1 in 6 patients with a dx of PMR goes on to develop GCA. It isn't always immediately, it can be months or even years later.

[mikldiamond in reply to PMRpro]

Yes, I have this guy feeling it's more than PMR. GCA Do you know if biopsy can still be accurate if I'm on Prednisone like I am?

[mikldiamond in reply to mikldiamond]

Gut feeling.

[PMRpro Ambassador in reply to mikldiamond]

The biopsy isn't that accurate anyway - it is only positive in about 40% of patients! Any pred may reduce the inflammation though they reckon the giant cells are still visible for at least a couple of weeks, sometimes longer. A positive biopsy means 100% certainty it is GCA - a negative biopsy only means that they didn't find the giant cells they were looking for and there are a load of reasons for that including previous steroid therapy, skip lesions (they aren't evenly spread through the tissue), it hasn't affected the temporal artery, poor technique on the part of the surgeon and histopathologist (far more common than it should be!).

But I think this needs discussing with the GP at least, repeat ESR/CRP tests and that IS a pretty elevated ESR, especially when you consider you were on 15mg pred.

[BonnyQuine in reply to PMRpro]

Need reassurance. Having a bad flare today (GCA), so panicking a bit. 'Earth-shattering' morning.

Sunday, of course.

Was on 17.5, trying to get down to 15mg Pred. Wonder how far I need to go back up?

Bloods tomorrow.

Noted DL's advice re blood results v symptoms. But feel v uncertain.

What do you think?

[PMRpro Ambassador in reply to BonnyQuine]

Try 20mg until you can see your doctor - a bit more if you need to but you need to talk to a doctor.

What sort of "bad flare"?

[BonnyQuine in reply to PMRpro]

Woke up w extremely bad headache, twice running. This morning = worst. Took 3 - 4 hours to become functional. Paracetamol had no effect.

Have woken up w headache, not as bad as this, several times during last week. Wondered re sinusitis ?? Pred withdrawal symptoms ?? . . . Improves as day goes on. But this = last straw.

[PMRpro Ambassador in reply to BonnyQuine]

You're saying it is getting worse? Don't rule out emergency medicine if a bit more pred doesn't sort it out.

[mikldiamond in reply to PMRpro]

Not worse but not good like I was. Will be with doc soon discussing this.

[BonnyQuine in reply to PMRpro]

Thanks - will watch and consider.

Have taken extra 5mg Pred now. If deteriorate again, may visit Urgent Care at local hospital.

[markbenjamin57]

Hi mikldiamond

Thanks for the update. I can well-relate on the PMR side and especially later yo-yoing with the preds. I agree with PMRpro re. the head pain - potentially far more serious if indeed early symptoms of GCA. My (amateur) advice would be to stick where you are currently with the preds for now, and bang hard on your GP's door about the sore head now - not later. Better safe than sorry...

MB

[mikldiamond in reply to markbenjamin57]

Hey Mark,thanks and definitely will be discussed at next appt. I still have my sights on my next century bike ride when I get through this😀. Hope all is well with you.

[markbenjamin57 in reply to mikldiamond]

Good stuff mik, but don't waste time with the GP / head pain in the meantime. I'm ok thanks, you're all keeping me busy with various posts in between other stuff! Keep in touch