Getting over IT!

[Johnnox]

I'm getting much more information from my fellow contributors than I am from my doctors! I got down to 2.5mg very quickly compared to many of you and I believe I've had a massive flare which I've endured now for weeks coming up to my next drs visit. In recent days I've increased from 2.5 to 5 to 7.5 mg and tomorrow to 10 mg. After just a few days of making these adjustments I'm feeling much less pain (8/10 now 3/10), a bit less fatigued though I get a bit dizzy occasionally and more flexible. I'll maintain 10 mg till I see my GP who I think is going to refer me to a rheumy. Am I on the right track?

[SheffieldJane]

Sounds pretty logical to me Johnknox. I guess you won't be whizzing down next time once bitten etc. 🍀

[jinasc]

Yes, when you knew you were having a flare, the idea is to hit it hard and fast, say 10mg for a few days, then go down by1mg a day till you get back to where you were at................but if at anytime when reducing go back to where you were comfortable and stay there for at least a month. Pred is not a cure, there is none.

The aim is to keep the inflammation under control, till your body gets to where it sends the PMR into remission.

Yo-yoing doses does not do you or your body any favours and can lead to its big sister coming along and you want to avoid that scenario.

I doubt he will refer you to a Rheumy, PMR is normally dealt with in primary care unless you then have complex PMR and I don't think yours is complex, just you have been racing to the bottom and that does not work. I sincerely hope I am right in my thinking.

Me GCA 5 years in remission coming up to 7th.

[DorsetLady PMRGCAuk volunteer]

Hi,

As jinasc says you may not need to stay at 10mg until you see GP, you could try reducing slowly before then - but that’s up to you really. It might be wise to stick at 10mg for at least a week just to make sure everything back in control.

The trouble is, as you’ve found out, your previous reductions were too quick, so unless you can remember the last dose you were good at, then you need to go a bit carefully otherwise you could shoot past your dose again.

[PMRpro Ambassador]

It is a good start - but when you reduce again you need to do something more like 1mg per month until you find the dose where symptoms reappear - and go back to the last dose where you were OK. Unless you know where you were OK last time down.

[Johnnox in reply to PMRpro]

Thanks PMRpro! Making sense! Cheers.

[Rugger in reply to Johnnox]

When I flared this summer, my GP advised me to up the pred from 4mg to 10mg. I saw the rheumy a couple of weeks later and she advised to stay on 10mg until my symptoms were 95% better. I was on 10mg for a month, then 9mg for 6 weeks, now on 8mg for a month and just about to start tapering at 0.5mg a month. I don't want to have to repeat the process again, if possible.

Slowly, slowly is the motto from now!

[Johnnox in reply to Rugger]

Many thanks! I think that I'm on the right track which correlates positively with the experience of many of you. I took 10mg this morning and coped well through the day and feel blissfully normal after dinner this evening. I plan to remain on 10mg for the month and reduce very slowly from there. Got my confidence back I'm content for this to take as long as it takes sans any more flares! Thanks to all!