I really dont understand pmr illness

Doctors love to give schedules out as to how much you take and when.  Wouldn't it be lovely if PMR cared what your doctor had to say.  It doesn't.  Prednisone should be reduced slowly and carefully to avoid withdrawal symptoms, and to minimize flair ups from going lower than your inflamation will allow.  Others here will in detail tell you how you can minimize such issues.  There is a strategy here called DSNS;  read it, live it, love it.  As for our Rheumatologist, if he really feels you should just grin and bear it, you need a new doctor.

Hi Julia, you have reduced a lot faster than many of us with this condition.  Maybe the gardening just tipped you over the edge.  I am sure you will get lots of advice from those with more experience of the condition than I have.  I've only seen the rheumatologist once and she was quite happy with my blood results and decided she didn't need to see me again unless I experienced any problems.  She also indicated that if at any point after a reduction that symptons start to flare - go back to where you felt ok.  In your case it may be that the inflammation was gradually building up and 8mg was not completely controlling the inflammation.  The gardening was a step too far.  I am sure someone will be along to suggest how to deal with things, personally I might be tempted to go up to 10mg and reduce using the dead slow method.  I believe there are many of us who are still on 10mg at the first year stage.   Good luck, Diana

I talk about pacing, but really, after a lifetime of working until something is finished I find it hard to stop. I'm getting better after a couple of years.

I'm currently on 2 1/2mg pred. When I do overdo things I notice some extra pain first in my wrists and if I don't take an extra 1mg for a day it escalates and I need more than a few days extra.

I also notice things that need a bit of strength or are repetitive short movements seem to aggravate me most. It seems that anything that gets my blood flowing (like a fast walk) helps reduce the symptoms - though its the last thing I feel like doing.

I'm much more confident with predicting the effects of what I do than I was a year ago. Partly lower pred/less symptoms but also simply time. I've got used to what I can and can't do. Also very different to the first few months where I hadn't a clue, everythng was uncertain and unpredictable.

With my background I try to stabilise things first, then "experiment". Change one thing at a time so I can see cause and effect. Not that easy of course when pmr effects everything I do.

Have you any signs of an infection? Some other problem?

But I'd say it was a delayed reaction to far too much gardening for your own good! And really, to have got from 15mg to 8mg since may is pretty good - many of us would take that and run. You don't say how long it is since you reduced to 8mg, I'm assuming you are reducing 1mg at a time. It may simply be that 9mg was "your" dose and 8mg is slightly too low and it has taken time for the inflammation to build up again and now you are in a flare, possibly exaccerbated by that gardening.

Look at the Dead Slow and Nearly Stop approach - however slowly you reduce you won't get below the "right" dose for your disease activity at the present time but many have got lower than before using it. It is in the replies part of this thread

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

But you may find some interesting reading in the other links.

was the wrong medication, what I meant to say I took Hydroxychloroquine.  The Hydroxyurea is for something else.  To get off of prednisone it took over a year.  After I god down to 15 mg from 40 I dropped 1 mg/month. Sorry for the confusion.

Keith

In case my experience is useful to you because although your reduction seems fast to some on this forum, it's pretty close to what I managed: I was at 15 for about 5 weeks then on doctor's orders started reducing by 1 mg per week until at 9 mg I felt some return of symptoms.  At that point I went online, found this forum and information including what my doctor had neglected to tell me, prednisone doesn't cure anything, only controls the symptoms.  I went back to 10 mg for a couple or three weeks then started the dead slow nearly stop tapering plan.   The tipping point for me where I had to slow down was apparently 9 mg; with you it seems to have been 8 mg.  I was really lucky and caught the flare before it got out of hand.  It took me from June 2015 to December to get from 15 to 8.  Since then I've reduced to 3 mg.  The main two things I've had to do, and I'm lucky that I can, is make sure I get enough rest, and actively avoid things which stress me.  Other than that it's just the usual - be careful of diet, supplements, exercise, use whatever alternative treatments also help you, that kind of thing.  Important thing is to keep the symptoms at bay, whatever works, and if it's a temporary increase in dosage, so be it.  

https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439  ;