The Ragnar method and the DSNS method
Posted , 9 users are following.
A few days ago, Eileen referred to a gentleman that started a special method to taper pred. She couldn´t answer the original question about how it started. I couldn´t find her post now but I will try to answer the original question about how it started. I am the gentleman referred to and I made a time-out period at 5 mg during one year due to fatigue. When continuing I thought it must be easier to taper if the taper period was prolonged. I therefore tested the following method: one day new dosage, two days old dosage and then I repeated it once more. After six days, I took the new dosage for a period and next time I wanted to taper, I repeated this method. At the time (about 10 years ago), I was posting fairly frequently on the Northeast forum, so I posted my method there as I had been successful using it and wanted more people to be able to try it. Many other persons in different countries of the world tested it and mostly with success. Somebody started to call it the Ragnar method (Ragnar is my forename). I now just googled “Ragnar method” and got many posts from different forums. I hadn´t seen the healthunlocked forum, so I didn´t know that the method had been discussed there also.
After some time, Eileen et al extended the period for the tapering and developed a method. It was then called the DSNS (dead slow nearly stop) method, and even more people have been successful in tapering as the extended period was better for the body for many. I think that it is important to go very slow. To me, it was more important than getting off pred. As I was on 5 mg I thought I could just as well stay on that for a year as the fatigue bothered me very much. Now I have been off pred more than 8 years without having a flareup. By the way, I never had a flareup as I went very slowly. Eileen is doing a great job explaining how it works and she really has helped a lot of persons.
I have have had atrial fibrillation for many years. I therefore take 2 pills of Warfarin every day except Wednesday when I take 3. Yesterday I was at the hospital to test my blood. I got a sheet with the new value after having a blood test and I also get the three last values for comparison. I also get information that my medicine is Warfarin 2.5 mg and the weekly dosage is 37.50 mg. The average daily value is therefore 5.36 mg. With the new paper in my hand, I thought about the pmr/GCA tapering. I don’t need to cut my tablets because during the week, the dosage levels out to be 5.36 mg per day and I just take an extra tablet during one day. I thought this could be interesting to compare.
0 likes, 6 replies
lodgerUK_NE RD_Swede
Posted
Hi Ragnar
We now have two mehtods, DSNS (Dead Slow Nearly Stop) and also TNH (Tortoise Not Hare).
We issue both free of charge when people send an email to PMR&GCAuk North East Support Group......... . This posting reminded to take look and see how many have gone out - over the past few years and as arough guide is well over 400. Our members also are given one and when people read the 'Living with PMR & GCA' booklet and read the article on the 'Slippery Slope of Reduction' we find the readers then send for the plans. These items have been posted to many countries outside the UK.
Eileen also has sent them out to many people and yes she does do a great job explaining. Eileen also co-wrote the booklet 'Living with PMR & GCA'. We have had two re-prints and have been asked if we are going to do a follow-up. We will one day, as we have learnt so much more, both from medics and patients experiences. This forum used to be called. "Patients Experiences" and I was quite disappointed when they changed the name. We learn so much from each other - just like I learned from you, when you were 'Captain Bob' on the good ship PMR&GCA on Canadian site all those years ago.
We do, of course, ensure that patients realise these have not been approved yet by the medics profession and advise that they should talk to their medics. Some do and some don't.
At a very rough estimate, I can only recall a few who have tried one of the plans, found one did not work for them and tried the other. I can recall, again, only a few who found that neither worked for them. But then very few tell you how they have got one with the plans.
However people on the three forums, do say whether they have helped or not and that is good.
Stay well and happy Ragnar - till we meet again..........
RD_Swede lodgerUK_NE
Posted
Hi LodgerUK,
I haven´t heard of the TNH method except that some persons have written in their answers: remember who won - the tortoise or the hare
I hope you are also well, Lodger
lodgerUK_NE RD_Swede
Posted
The hare won, 5 years into GCA and it went.
Will send you a copy................
EileenH lodgerUK_NE
Posted
And can I just add that the Dead Slow and Nearly Stop approached HAS been granted approval by medics and an Ethical Committee as it is being used in the StayActive study currently being done by the Leeds group under Prof Sarah Mackie. The feedback from patients to date has been good - all have said it is better than any other reduction they have been told to use by their doctors.
Recently there have been some posts from US contributors whose doctors tell them never to reduce more than 1mg per month - right from the start at doses of 20mg or so. We've being suggesting that for about 6 or 7 years now.
And one lady on another forum claimed the DSANS approach did not work for her but alternating old/new for a week did! I can only assume she hadn't got the DSANS technique right!!!!
nick67069 lodgerUK_NE
Posted
I think 400 is very low estimate... Many people, like me, got the information from this forum about DSNS and used it successfully. I can tell you that thanks to it, I have averted flare up at least once, when attempted to go from 5mg to 4.5. About half way into transition my body started to complain and symptoms were increasing... so I went back to 5mg. I like "slow" method because it gives the body time to adjust and , if there is a problem, it gives me a time to react and prevent a flair.
lodgerUK_NE nick67069
Posted
Nick
The estmimate was taken from our very, very charity and the amount of requests made direct to us or via a PM from the two forums.
I sincerely hope there are many many more who have benefitted.
Patients helping Patients is a good thing - but we always remember, what works for one does not necessarily work for another. And we always are aware of 'Do no harm'.