Over 4 years I have slowly reduced my prednisolone from 15mg to a half, with only one minor flare. Using the DSNS plan I am now at half one day, zero the next. What now ?I guess that I should increase the zero days, slowly, but I think that this quite scares me.
I have very little pain, mainly discomfort, but not the same as when I started this journey.
Any thoughts wonderful folks ?
All you can do is add in more days on zero.. and see what happens.
So try 2days zero (although not consecutively) for 2-3 weeks… if that’s okay then 3days again for same time, and just carry on in similar fashion.
If you stay at each stage for 2-3 weeks that’s give you time to know all okay before you try next step.
If you aren’t sure at any time, just return to previous stage and settle things.
No rush.. and good luck
Thank you DL. I just needed a bit of reassurance. Thank you.
That’s what we do…😊
You just use zero as the new dose, as you did for all those other dose reductions before. As DL says - take all the time you need, there is never any rush and may give you more confidence. After all, if you get to 1/2mg one days and nothing for 14 days, it does suggest the 1/2mg hasn't a lot to do doesn't it!!!
All the best!
Hi! I was diagnosed with PMR 6 years ago and was trying to get out of prednisolone by DSNS reduction plan. Had several flares on the way. I stayed on 1/2 mg for 3 months, then 1 month on every other day. I think that scare of stopping prednisolone completely at this stage is more psychological, then physical. I was really scared to stop completely, but I finally stopped 2 month ago. Feel ok now, with sometimes mild discomfort in shoulders area that happens mostly at night. I started exercising and found out that shoulder exercises like rotation helped a lot with stiffness and discomfort.
Don't be scared! Best Luck!!
I have been around 0.5 mg for around 2.5 years. I even stopped for about 3 months but had to restart at 5mg because it all flared up again. To get off entirely, I did as Dorset Lady suggests - more zero days than 0.5 days.
I am left now finding that, after several tries to get to zero, I am stuck on 0.5. My adrenals are working fine, so there seems to be no good reason not to stop, but yet I cannot make it stick.
My rheumatologist's advice is that 0.5 mg is a lot less than the body naturally produces, so if I never stop, he has no problem with it. My own view is that it is enough to be the lowest dose I need to keep me comfortable, so I'm not going to worry either. I may try again to come off entirely, but as my heart health is not ideal at the moment and I'm waiting for the OK to have the winter vaccines (which always make me flare), I'm not doing anything till the spring.
Would agree with your Rheumy - and you. If you are happy on 0.5mg then stay on it.. for as long as you like..
I went a slightly different way to zero. I halved the halves to a quarter mg of pred, and alternated those with half until I was on a quarter daily, and then alternated the quarters with zero. I was scared about flaring, and so was extra cautious. It took ages but then I was off altogether for over a year. PMR has stayed in remission but that darned LVV returned to haunt me, so sorting that out now. All the best!
Thank you. Hope LVV gets sorted quickly
All so helpful! I have a friend who rings to ask how I am .. in general! She says if I mention steroids she’ll put the phone down!!!!! Some friend!!others congratulate me!! Am 86.. ! Now on 1mg every day for the moment.. helped by so many of you with thanks. I will then introduce 0.5 gradually.. DL plan.. have had no flares as such! Just increased exhaustion?! But age?!
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