PMR update

[Middleton22]

Just a quick note to let all you wonderful people know my journey this year. I have just finished DL taper from 3mg to 2.5mg and will stay on 2.5mg until the end of July before reducing again to 2mg. I think that I've been quite lucky as no flares YET and wonder if this is due to me being diagnosed relatively quickly (within one month). I know some people are in pain for quite some considerable time before starting pred.

I do experience tiredness but make myself rest, rest and more rest if needed. I read all the daily questions which have helped me immensely and many, many thanks to everyone who has given me good advice over the last 18mths. Fingers crossed that the next taper to 2mg will go ok. Best wishes to everyone.

[DorsetLady PMRGCAuk volunteer]

Hope so too, but very often the last few tapers are sometimes the hardest to achieve.. very little wriggle room.. so really no rush.

Good luck, and keep resting!

[Middleton22 in reply to DorsetLady]

Yes I definitely intend to take it slowly and listen intently to what my body is telling me. Feeling pretty good at the moment and looking forward to September when we are due to go on a cruise. Hopefully will be down to 2mg by then and return to tapering on my return home...that's the plan and just hope everything goes well. I cannot put into words how much I have relied on information given to me from all the members of this wonderful forum. Many thanks and fingers crossed the plan works.

[PMRpro Ambassador]

A really critical factor in being able to taper without too many problems really does seem to be the speed,

It was said years ago by one of the top PMR experts that reducing more than 1mg per month was predictive of flare and elsewhere that almost all flares were due to reducing the dose too fast and too far. The only people who have learned from that appear to be this forum and a few exceptional rheumies who listen to us!

[Middleton22 in reply to PMRpro]

Yes I agree about tapering too fast and I will only be reducing by 0.5mg and only if I feel able. I may have to stay on 2.5mg longer if I don't feel the time is right to reduce to 2mg. No rush to get down to zero.

[Brooklyn747]

This is all very interesting, as I was typical of experiencing a flare due to tapering too fast....but I was following medical instructions. I feel a great indebtedness to our ambassadors on this site as without them I'd literally be up the creek without a paddle.

I learn something new every time I tune in to this wonderful forum.

I'm so very grateful 🙏