PMR and after Prednisone

[jensen0518]

Thank everybody for all your help

So far I am doing as of now I am taking 4 mg of Prednisone and try to do some exercising every day. In fact in May I plan on running a 10 mile race. On 2/17/2020 I plan to taper down to 3 mg of prednisone. I see the doctor on 3/6/2020 assuming everything is good. I plan to continue to taper down 1 mg every month. So around May i should be done with prednisone. Any advice on what to ask the doctor. Should I have plenty of supplies of prednisone after I get down to 0. What concerns should I have. Can PMR come back and what should I do. My biggest fear after completely ending prednisone is that I Have a relapse and not having prednisone.

If it does come back would be after a certain time?

Thanks

Jim

[GOOD_GRIEF]

You might want to consider stepping back by 0.5mg for 3-4 weeks at a time to see how it goes. You need to get your adrenal glands working again.

There's no way of predicting when or if your PMR will re-emerge. Maybe you're done, and all you need to do now is kick-start those adrenals.

You obviously know what PMR feels like when it's active. Ask your dr for a prescription that would tide you over until you can see them if it re-emerges.

[Hidden]

Hi Jim

I wouldn’t be too fixed on achieving Zero Pred on a specific date, are you actually running this kind of distance at the moment? Or will you be reducing Pred possibly to Zero while you are increasing your running distance?

How long have you been on Pred?

MrsN

[PMRpro Ambassador]

Even as little as 1mg/day can be enough to manage the inflammation once PMR has settled down - but it doesn't mean it is gone altogether, You just have to reduce VERY slowly towards the end and be sure you are still on enough - and one day you will be able to get the pred right down to maybe a 1/2mg every few days and can take the plunge to none.

[SheffieldJane]

Good luck! A man with a plan!

[PMRnewbie2017]

Remember the 10% rule? A 1mg reduction from 4 to 3 is 25%! From my experience this could cause problems. I'm trying to get to 3 from 3.5 and its taking a while with some periods via 3.25mg and I use Dorset Lady's DSNS. Even if pmr doesn't resurface you will probably get the pains and stiffness associated with lack of cortisol and as we all know it's not easy differentiating between the two. Personally I'm finding it harder getting off the Pred than I would have believed. I'm now wondering if the 2 year duration of illness theory applies to the illness alone and the remaining time (up to 3 years) relates to getting off the Pred?? I've worked out now that my aches aren't flares but it's taken me a long time to realise this.I've binned the hare and become a tortoise!!