I don’t write often , but I am a sponge for the information that I have received on here.
My rheumy lets me follow the DSNS method after I showed it to her. It is getting close to two years for me with PMR. I am thinking that I may be in the lucky 30 percent who get over It in that time. I am down to 5 mg. Pred. I understand not to be in a hurrry , but what if the PMR is actually gone and I am going so slow. My question is “is there a quickie version of DSNS” ? I think I saw on here that instead if the 6 days old you could shorten to 4 days old instead. Am I correct. I really want to shorten the time frame, but do not want a flare of course?
Thanks for any input.
I
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Chopin002
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You can shorten it but beware: once you get to the returning adrenal function realm you should be slowing not speeding up. And believe me - you might think the end is in sight but I know several people who were brilliant at 1 or 2mg but within 6 months of stopping pred, PMR came out to play again!
You can shorten it - but you won’t know whether it’s going to work until you try it.
Plus you won’t know for sure if your PMR has gone until you reach zero Pred, and have no return of symptoms.
As you are down to 5mg, I would be inclined to follow the scheme that has proved successful to date - and not risk rocking the boat. Going slower also assists your adrenal glands function again.
I'd be tempted to say No , because you feel like you are doing so well.
The Method is working and giving you enough energy to keep building the strength up in your body with good nutrition and a slowly graduated increase in your activity.
Plus , if you are still on 5 mg you are only really just within the Adrenal Phase , you cannot be sure wether you may have the side effects that are common to this on the way soon.
If you are doing that well that PMR isn't just well managed but is actually inactive , by the time you do reach Club Zero you will have less chance of it coming back, and, because you have been able to spend more time on restoring your body while still taking Prednisone your Drug Free Recovery Phase will be shorter too.
Don't be tempted to put all your good work in jeopardy by trying to do a Sprint finish.
Wise decision! After over 2.5 years I was on 1.5mg and quite smirky with it!! Then came the dreaded flare (which I didn't recognise as I hadn't had one before). After much faffing about, light dawned and I increased to 5mg. Now on 3mg and still not quite back on track. So that taught me!! Onwards and upwards (or downwards) ......
It would have made more sense to taper with the four day version when you were still at higher doses. The lower your dose the smaller the steps should be and the slower you should go because each step down is a larger percentage of the dose. I think it would be a mistake to speed up your taper at this point.
This is the way I used DSNS from 10 mg: Four day turnaround, 1 mg per time, until I got to 8 mg. After that I tapered by .5 mg at a time, but I would drop a second .5 mg half way through. That way I continued to taper by 1 mg per month, I can't remember if I was still using the 4 day turnaround at that point, I think I was. But as the dose got lower I certainly went to 6 days and at a certain point, probably around 5 mg, I only tapered by .5 mg and didn't drop the second .5 mg halfway through. I'd go dig out my old diaries and tell you for sure but it's getting late and I'm not sure where they are. However, I did spend a couple of years hanging around the 2-2.5 neighbourhood because that seemed to be my lowest best dose. I didn't seem able to taper lower. Last year I decided to try a new thing and I tapered by .5 mg at a time by doing each step of the long version of DSNS twice - so three months to taper by .5 mg! This got me successfully to 1 mg, and I thought was working for .5 mg, but apparently not because as I neared the end of the three months taper from 1 mg I began to detect the unmistakeable niggles of PMR. so I will be returning to 1 mg again. This remission thing is not a foregone conclusion and I've been overly hopeful several times. 🙄Like you, I think, I've had a relatively uneventful taper, getting to 3 mg from 15 by the end of the first year. But I started pred in 2015, so I've been on a very low dose for a long time now. I can tell you it's hard to believe that .5 mg can make a difference, but it does!
Thanks for your detailed response. I get it. That is why I am so greatful for this site. No more thoughts of a speed up. Slow and steady wins the race. 😉
Hello Heron. When you say 'After that I tapered by .5 mg at a time, but I would drop a second .5 mg half way through. That way I continued to taper by 1 mg per month, ' how did you drop the 2nd .5?
Since being below 10mg I've been using DSNS with 1/2 mg drop each time, which takes more than 1.5 months.
If I remember rightly, when she got to the alterate days old and new dose she took the new dose there as the old dose rather than completing the full cycle adding days at the lower dose and reducing the old dose days. Does that make sense?
Yes, I would drop another .5 mg, and that would become a "new" new dose, while the previous new dose became my new "old" dose. I'd do this exactly in the middle of the DSNS taper, so I never at any point in the taper dropped by more than .5 mg on a given day. It made it much smoother for me. I don't even know if it was necessary, but I did find it very smooth in terms of avoiding pred withdrawal symptoms, rather than starting a 1 mg drop at the beginning of the taper.
For example, I'd be tapering from 7 to 6. I would start by tapering 7 to 6.5. All being well halfway through I would slide into tapering from 6.6 to 6.
It was not any particular difficulty I had tapering but rather reading about other people's experiences which made me think it would make sense to be very careful. As I indicated, at some point I stopped dropping that second .5 halfway through and stayed with a .5 total reduction throughout the taper, and also used the longer 6 day start/stop cycle rather than 4 day one.
My experience after five years of PMR is very similar to that described by HeronNS.
After two years I was down to 5.5mg. Now two and a half years later I am at 1mg.
So, on the basis of my experience I think you probably should reduce your expectations! The average length of PMR, when treated by prednisolone is quoted at 5.9 years. Think this way, and if you're off pred in a shorter time, then that would be fantastic.
Certainly, from following posts on this forum over the years, the road from 5 to zero seems to throw up some unexpected issues.
I wish you luck, and hope I am wrong in your case.
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so I will be returning to 1 mg again. This remission thing is not a foregone conclusion and I've been overly hopeful several times. 🙄Like you, I think, I've had a relatively uneventful taper, getting to 3 mg from 15 by the end of the first year. But I started pred in 2015, so I've been on a very low dose for a long time now. I can tell you it's hard to believe that .5 mg can make a difference, but it does!
What is DSNS?
DSNS method
Hydrocortisone and DSNS
