Not so cocky anymore : Well, I confess I was... - PMRGCAuk


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Not so cocky anymore

Littlesky profile image

Well, I confess I was feeling pretty full of myself. Learned so much from the wise ones on this forum and used DSNS from the start in early 2017. Religiously followed an anti inflammatory diet (I also have Parkinson’s Disease so was feeling super-cautious). A week ago, I sailed smoothly from .5 mg and stared 0 in the face pain-free and then... I awoke with that dreaded old ache in both hips. Could barely move. .5 mg didn’t help much. I toughed it out for a couple of days and then took 3 mgs pred this morning. Pain not gone but almost. Is this a flare? Should I go higher? Or should I try to hold steady at 3 mg? I’m so grateful for this amazing group! I

11 Replies
PMRpro profile image

It is a flare, probably because you have overshot the dose you need. I would try a couple more days at 3mg - providing the aches get better not worse. A lot of people getting to this stage mark time between DSNS tapers to be sure the new dose is still enough. It can take quite a while for it to show up when you have got to this level and the margins of error are VERY small.

But it does look good for a low low maintenance dose!

Littlesky profile image
Littlesky in reply to PMRpro

Thanks PMRpro, 3mg seems to be holding the course tho not entirely pain-free. It’s tolerable now; is that good enough? Do I risk anything by not going up to 5 and obliterating the pain? Trying not to overreact here. So

do not want to return to square one!

PMRpro profile image
PMRproAmbassador in reply to Littlesky

Not in the long run I don't think - providing it really isn't getting any worse. But even 5mg is a very low dose and a few days at 5mg might make the difference in the pain stakes - and you can drop back to 3mg afterwards.

Littlesky profile image
Littlesky in reply to PMRpro

Thanks again. Going back to 5 for, I hope, just a couple of days.

Bummer. "Fool me once, shame on you; fool me twice, shame on me." ...however, I've been fooled many times in the past 9 months! You get a false sense of security and you do get a bit cocky! It's normal. I hope you feel better soon!

Question: when you went to 0 did you do like one day 0 & 10 days old dose, one day 0 & 9 days old dose? Like that?

PMRpro profile image
PMRproAmbassador in reply to ConventCassie

I know some people have done so.

ConventCassie profile image
ConventCassie in reply to PMRpro

Anxious to know in this situation. Or maybe in the future for LittleSky. So close :)

Yes, I faithfully did the 26-day DSNS plan dropping 5mg from 20mg-15mg daily, then 1mg from 15mg-7mg, then .5mg from 7mg-0. All really was going perfectly until I was two days from my last .5mg day and woke up with achy hips. I tried a couple of days at 3mg but the morning pain didn't quite go away. I'm now back at 5mg and fine. I'll probably stay here another week and then start dropping again using the same 26-day plan that was working so well. Finally coming to terms with what PMRpro has said all along - The disease will decide when it's done. Bummer.

Sorry 😖 I’m planning to be there soon hopefully. I hope we don’t have to start a new Club. (The Near Miss) Yep. We’re not in “control”. Incidentally does the diet help Parkinson’s? (I’ll write my nephew.)

Yes! At least it has for me. So there's some good news, after all.

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