Scardie Cat

Hi whitefishbay, I hope to get to that small a dose, when I do I will go from 1 mg to a .5 mg using DSNS. Good luck take your time, think positive and smile. ☺️

A friend of mine who also has pmr has been doing the dsns method to get to 1/2 many many times...she’s even tried 1/2 every other day but had to go back to 1.  Based on her experience and what I’ve read on this forum and your mentioning your feet, I’d say you at least need to think about slowly tapering to 1/2...others on here know a lot more than me though!

HI there, 

well March 15 th was my last day of taking my last 1 mil dose of pred after three years.

i went until June 15 th and believe me I cried making the decision to start again after the dead slow taper.

i gave it the three months hoping the pain would ease up but it did not.

my Rheumy was on vacation so I started with 7 mil for two days, pain almost gone with first six hours, third and fourth day five mil and now at 4. I'm staying at 4 mil for a few days then will go to 3.

im lucky I only needed a low dose start to feel better and want to take my time now to get to a comfortable dose even if it takes a bit longer, I will probably go down 1 mil a week and see if it works  and hopefully for you you can end it without a flare.

i had thought it was pred withdraw earl but suffering for three months was just sheer agony.lgood luck!

Ask your doctor to allow you to keep a reasonable supply of 1 mg uncoated tablets so you can reduce to .5 and eventually alternate days of no pred with .5, provided that amount is still working for you.  If you can continue to gradually reduce the days you take that minimal dose without return of symptoms I'd say you are really  in remission.  If you start to have the return of symptoms, then PMR is still present and you need that tiny amount to keep you well.  

I felt so well about a year ago on 1.5 I attempted to continue tapering, with, unfortunately my doctor's encouragement and failure to renew my prescription.  I ended up with a relatively minor flare, but a year later I have finally got back to 2 mg and apparently unable to get back to my last best lowest dose.  I really believe the lower the dose the slower you have to go.  You really shouldn't try to drop to zero directly from even 1 mg, but taper it down as slowly as you can.

Please let us know how it goes.  Good luck!

As I've reported on here before, I was down to 1 when I had my hip replacement and was instructed by the pharmacist at pre op interview that it was important not to think of stopping until after my post op assessment so obviously she considered this very small dose was still significant.  At that level why would anyone be agitating to get us to zero but I know some medics do.