Modified DSNS
Posted , 15 users are following.
As most of us do, I would like to start trying to taper my prednisone dosage. I understand and appreciate the value of the DSNS regimen but am looking to try to shorten the process somewhat.
I am thinking of starting at 1 day new and 4 days old and then stopping at
1 day old and 4 days new.
I am aware that everyone is different but was wondering if anyone has had success with this scheme or something similar to this.
Thanks
0 likes, 47 replies
wannie rocketman42
Posted
Hi there, Like you I wanted a shortcut--forget it . There are none.
You will be sick as a dog and in a lot of pain--slow and easy is the way to go.
Its a pain in the ___ but you will be all the better for it.
Follow the plan to taper your dosage under a doctor's care--if you taper to fast you can damage your adrenal glands . Thats why we taper slowly so the adrenal glands can catch up.
Be well and follow the plan....I would so hate if you became ill.
Cheers
Wanda
mark9992 wannie
Posted
I just finished a full DSNS schedule reduction from 6mg to 5.5mg. I had tried once before, and just wasn't comfortable, so I stopped, waited a week or so, and then started all over again. This time it worked. The first time I think I'd clipped a week off the top and bottom of the schedule. The second time I did it exactly as written..the whole 50 days give or take, and I'm fine. So tonight is my first 5mg dose on a new full schedule. It will succeed, or fail, and if it fails, I'll pause briefly and start again. If the disease and I stay on the same page, I'll zero out just beyond the 3 year mark, and consider myself lucky, but of course, PMR has a mind of its own. DSNS has done right by me, and after this reduction, all my reductions will become a percentage greater than 10% of my previous dose. all the more reason to go slow. Once I do get below 5mg, and especially below 4mg, I'm looking for some benefits such as the ability to produce nitric oxide for my arteries again, and lower blood sugar. For now I must be a patient patient. This damn illness wants my time, and no doctor can tell it different.
mark
wannie rocketman42
Posted
Hello Scott again.......I forgot to tell you since Ihave been on and off this drug so many times,(pmr keeps returning) the thing that helped me the most was
VITAMIN D. Don't know why,don't care----saw a doctor talking about how he gives it to his patients. It works.
EileenH wannie
Posted
Severe vit D deficiency can cause symptoms that are similar to PMR and it one of the things a doctor should rule out in the differential diagnosis. However, severe depletion doesn't always cause any obvious symptoms - my husband's level was the dizzy heights (or should that be depths?) of 7. No symptoms at all. Except possibly raised blood pressure which has now gone down since his vit D level has been sorted out. And unfortunately getting my vit D back to an OK level didn't get rid of my PMR.
rocketman42 wannie
Posted
koen1 rocketman42
Posted
rachel24455 EileenH
Posted
I was diagnosed with severe vit d deficiency at the same time ( as well as hypothyroidism)
i now understand I'm a host of hideous auto immune diseases and don't just have one. Or two...
FlipDover_Aust rocketman42
Posted
You can make all the plans you like, but PMR will tell you how much pred you need unless you are prepared to live in pain. You simply can't rush PMR.
That said, I haven' followed the DSNS striclty - I reduce when I feel I can - and don't when I feel I shouldn't. Some weeks that's 1mg, some months it's nothing.
Michdonn FlipDover_Aust
Posted
FlipDover Aust, I only reduce when I am PMR pain free. That is why I stayed on 30 mg for about 6 weeks. My Rheumy wanted me to reduce and I would not. I could not walk, a couple of people on the forum talked me into trying, I was in bad shape. I laid out a plan, but it can and will be adjusted to the conditions of my body. Moving forward with a smile on my face.🙂
Anhaga rocketman42
Posted
This is what I did at first, between about 10 and 7 mg. Then I just went by how I was feeling, usually six days to start, but often not going the full six days at the end. I also started dropping by .5 mg, then a further .5 mg halfway through the taper, thus achieving a full 1 mg reduction per mmonth or six weeks. Able to do that for a while, would have to refer to my notebook to tell you when I stopped doing that but I think I've just been doing the .5 mg per taper for a while. And it has taken me as long to get from 3 to 1.5 as it took to get from 15 to 3: a year!
Michdonn Anhaga
Posted
That makes good sense Anhaga, you are listening to your body and making the adjustment accordingly, good for you. How are you getting .5 mg pills cutting the 1 mg? Thanks! 🙂
Anhaga Michdonn
Posted
I use a pillcutter the pharmacy gave me! It had a drug company logo on it but that's worn off now. Took a whle to learn how to use it so I had two reasonable halves, not one half and a pile of crumbs, but I can do it now. You can buy pillcutters ar pharmacies, probably not worth the effort to buy online as they are so cheap, and I bet the cheaper ones are the best. Certainly my free one does the trick. It's all in how you hold it.
Michdonn Anhaga
Posted
So you are cutting 1 mg pills, those pills are small. I have a pill cutter that I use on 5 mg pills it works good. I will have to try it on 1 mg pills, when I get there. Thanks
🙂
rachel24455 rocketman42
Posted
Scott I'm 7 maths in and have gone from 20 to 15 to 12 to 7.5 and then yo yo'ed unhappily. Then back to 14.5 and made weekly drops of about 1mg. I am now comfortably on 7.5 and have been for a fortnight.
will drop .5 tomorrow and then further reduce slowly.
will also use 6 weekly blood tests to check my CRP and ESR
im expecting the fatigue to increase again sadly
EileenH rachel24455
Posted
If you slow the reduction down a bit from here on then the fatigue may not increase. This is the point your adrenal glands have to wake up and top up the amount of pred with cortisol. Letting your body catch up makes a lot of sense - it isn't only the fatigue but when the adrenal glands haven't settled down you are at risk of becoming very ill if under stress of any sort.
rachel24455 EileenH
Posted
Thanks Eileen, as ever. I now think that my difficulties in the beginning were as much side effects of the pred as the disease itself.
I still feel the morning stiffness and general discomfort that reminds me I'm not well, but by pacing my self I really feel I'm on top of it.
Will continue slowly and am hoping it's not just the sun that's made me feel good!