How was DSNS developed?

[judyb100]

I know this has been discussed, but I can't find it. Is there a description somewhere about how DSNS came into being and why it works well? I'm going to see my rheumy and try to explain why I'm doing DSNS instead of what he recommends.

[PMRpro Ambassador]

Some years ago a gentleman called Ragnar (the Swede) found it impossible to get below 5mg using conventional wisdom without flaring. So he spread the reduction step over several days and repeated the pattern a few times then worked it out so that he got from old to new dose over a much longer time than just overnight. I can't remember the details now. He succeeded in getting down to 3mg before getting stuck. Over time he got to zero - and has been off pred for several years.

Initially on the 2 PMRGCA forums that existed then (patient.info and the NE forum) we suggested people use it for the end of their reductions - but then realised that people were struggling far earlier, even at doses over 10mg. And one lady had had a flare and had to go back to over 20mg to get it under control, but whenever she tried to go down as her rheumy said she had pain and discomfort. He was insisting on 2.5mg and that didn't work but 1mg at a time did. We realised that in many cases people thought they were flaring when really it was steroid withdrawal - some people are very sensitive to change in dose, I was but it is difficult to tell the difference. So I had the idea of extending Ragnar's version to be used at much higher doses and wondered about simpler ways of arranging the doses. That was how the Dead Slow version was born - and I made it so you could make it slower or faster depending on how you got on. Using a calendar you can mark the days for the new dose and count the days between - it is hanging on the wall or in your diary (which was how I did it) and you can look to check and keep a note of experiences and symptoms and match them to doses.

I think it works well because you only ever challenge your body with the new dose one day at a time - and the next few days you are back to the old comfortable dose and your body stops panicking. I found it takes me 3 single days of the new dose before my body accepts it - and before I get to the end I start to feel "different" on the single days I am taking the old dose. Then I stick to all the new dose until I decide it is time to start all over again.

The other point is that by going so slowly with small steps down you have a better idea of whether it is steroid withdrawal - very unlikely really with DSNS - or a flare. The real crux is not reducing in big steps - 2.5mg is often fine at higher doses using DSNS but might not work just going from every day one dose to every day a lower dose straight off. Using DSNS is actually NOT that slow because you are only ever a month behind what you might be at just going from one dose to the next overnight. But it is also far more likely to work without discomfort that you can't be sure is just steroid withdrawal so you can stick it out rather than a flare where sticking it out leads to trouble. People rarely have to go back more than a few days on the dose - no big steps up to manage a flare and having to reduce again. When you try to rush it you have flares that send you back to a much higher dose - lost time and often when you get into a yo-yo pattern with dose it gets harder to manage the symptoms. No-one knows why - it is just so.

There might be other comments in the original:

healthunlocked.com/pmrgcauk...

[judyb100 in reply to PMRpro]

Thank you, PRMpro. This is great--just what I need for my appointment!

[PMRpro Ambassador in reply to judyb100]

Hope it works!!!

[SheffieldJane in reply to PMRpro]

We have a great deal to be thankful for. 🌸🌸🌸🌸🌸🌸

[judyb100 in reply to PMRpro]

Thanks again for your help. The visit with my rheumy this afternoon went well!

I showed my doctor the information on how DSNS was developed plus other details from this website. He was mainly interested in reading about the actual taper (one day new dose, six days old dose, etc.). His main comment was "That's REALLY slow." I told him I'd been using this method and it seemed to work well, so he said, "I think it's OK, but make sure you follow it exactly."

I like this doctor and I've been trying to have a good relationship even though his tapers have been too fast for me. So I feel like I'm still on good terms with him plus I'm using a better tapering method. Just what I was hoping for.

Earlier this year, I asked this doctor if there was anything else I could do to get over PMR such as a different diet. He gave me info on an anti-inflammatory diet which I have been following. It did not get rid of my PMR, but it made me feel better and I lost ALL my excess weight and have had no trouble keeping it off. So I'm grateful to this doctor even though PMR is still a problem.

[PMRpro Ambassador in reply to judyb100]

It doesn't HAVE to start at 6 days - if you can manage it you can start at only 3 or 4 days between - and that is mentioned in the text. It is easy to adapt to your own needs and some people are very sensitive to the change in dose. There are people who can just go from one dose to the next and barely notice. DSNS was aimed at the people who can't or who start to struggle with reductions at lower doses.

[ConventCassie in reply to PMRpro]

Ummm. I just can’t resist. I am overwhelmed by the debt we owe to you for this development...not a minor thing. I think it’s up there with a special day being named after you! You have single handily set us up for SUCCESS! And there are continually more numbers being added to this population - I see it as an epidemic! A whole lot of people owe you a great deal.

THANK YOU!!!

[PMRpro Ambassador in reply to ConventCassie]

No - by no means single-handedly. Three or four of us had worked out something similar at about the same time - we were all on another forum and Ragnar had sowed the seed. It just seemed so logical when you look at the problems people have reducing. And then you have to remember that some of those others were the ladies who did so much to set up PMRGCAuk and the associated forums - without which you'd never have heard of it!

[Purplecrow in reply to PMRpro]

May be that others helped develop the original format for DSNS, But PMRpro is the one who repeats it for us, whenever someone asks.

For that PMRpro, you deserve our endless gratitude!

So there!!!😁

🙏🏽🙏🏽🙏🏽Jerri

[jinasc in reply to PMRpro]

Hi Kidda

I added the link so that people could read the bit about Sarah.

Be in touch soon. xx

[ConventCassie in reply to PMRpro]

Well, then you can all share that NOBEL PRIZE!

[Baileyw06]

I took a copy to myDoctor and she has put in my medical records and

Has used it on other patients.You accomplish the same result at the end of the month which she is happy with .

[jinasc]

pmr-gca-northeast.org.uk/as... Page 3

Newsletter 'You Are Not Alone' , published last year.

It also includes a few words from Dr Sarah Mackie's small study.

This is a copy of an message to Ragnar on St Lucia's Day, it might make you smile.

'Hi Ragnar, (aka Captain Bob)

I chose New Years Day so on 1.1.2018 - into 7th year remission with GCA.

I lit a candle this morning - white one - for you have done so without telling you every year since we met.

Take care my friend and a smile from the Donkey Person on the good ship.'

Yes, I was the 'Donkey Person' It used to be Donkey Man, but PC was introduced.