Members' experience of minimum prednisolone levels

[pwc51]

Thank you all for your comments - so far I have managed three weeks of no pred ..... how long will it last?!

As Pete suggests it is 'easy' to keep thinking that a particular symptom is age related rather than WG - I was doing that at the start and keep falling into the 'trap' now! If this is WG what does aging feel like?!!!

[Pete]

If this is WG what does aging feel like?!!!

You don't look old enough to be worried about aging!!

[pwc51]

Sadly I will be 62 next Monday so it is catching up with me from time to time. I keep thinking I should be able to do the same things I did when I was 20 but somehow I can't and the WG just makes the frustration worse!!

[JeanMarie]

I'm currently going down 1mg every 2 mo--now at 8mg. My Rheumy agreed to wait until after the holidays for any further reduction. Last time around my blood work got a little funny when I hit 7mg, but I was asymptomatic, so we continued to taper. I got down to 4mg & started to show kidney involvement so they upped the pred. to 20 & started to make arrangements for RTX--The doc repeated the tests waiting for the RTX to come & the kidneys looked fine & still do--so I am back on this slow taper. I have other things wrong so we are trying to use as little RTX/CTX etc as possible & I hope I'll be able to get down to at least 5mg pred. Aren't we having fun

[annekat]

It is interesting how such small reductions in pred can cause such changes in how we feel. I'd had pred before dx, in short-run tapers, but had no idea about this facet of long term use until I read it on the forum. My doc doesn't talk about any of this.... maybe he knows I read the forum, maybe he's reading it on the sly! Who knows. All I know is I'd be totally in the dark without this forum. I would like to get down to 5mg. and would probably be fine with that for awhile.

[Debbie C]

I've been at at 5 mg for a couple of years now and the dr. said I can start tapering to 0. but unlike most of you I am not taking any other drug to fall back on so I am still waiting. As much as I want to get off this stuff, I don't want to suffer the consequences of a flare.Still under to much stress to chance it.
Happy Birthday on Monday pwc51, you do look very good and 62 is not old. I remember when I was younger how 30 seemed old. Hope you stay feeling well and have many,many more. Good Luck with the pred.

[annekat]

Sadly I will be 62 next Monday so it is catching up with me from time to time. I keep thinking I should be able to do the same things I did when I was 20 but somehow I can't and the WG just makes the frustration worse!!

Happy Birthday, pcw51! I am only about 9 months behind you, age wise. I think you look great, and there are still many things we can both do!

[Alysia]

Happy Birthday, peter

may your birthday present will be ever-lasting med-free remision

[Pete]

Sadly I will be 62 next Monday so it is catching up with me from time to time. I keep thinking I should be able to do the same things I did when I was 20 but somehow I can't and the WG just makes the frustration worse!!

Happy birthday, Kid!!!