DSNS ad DL’s meaning? Can’t find o FAQ

[Tayzee]

Looking for meaning plz...

[SheffieldJane]

Dead Slow Nearly Stop - a method of slow, careful tapering outlined in the pinned post on tapering.DL is our own Dorsetlady who developed a tapering scheme that a lot of people have found useful.

[Tayzee in reply to SheffieldJane]

👍🏻🥳👏🏻👏🏻 Thank you 🙏

[Hidden in reply to SheffieldJane]

I think that the DSNS method came from PMRpro, DL's is another variant?

[SheffieldJane in reply to Hidden]

I am sure you are right. I wondered if she had put a reference in from another source.

[Hidden in reply to SheffieldJane]

From memory I believe that she referred to a guy who managed to get off of pred using the DSNS method that he 'invented' don't quote me though.

[HeronNS in reply to Hidden]

Yes, PMRpro's Dead Slow Nearly Stop method derives from a slow taper devised by a Swedish gentleman who was having a lot of trouble tapering off. DorsetLady's simple taper is another way of gradually introducing the new lower dose.

healthunlocked.com/pmrgcauk...

[jinasc in reply to Hidden]

I thought some of you might be interested in the history of how Tapering Plans developed all by patients. Also the account of the 'small trial' might be of help to some of you when talking to to your medics who are trying to force the pace.

DSNS is the only one to have been the subject of a very small trial.

Ragnar (Swedish) came to a support group meeting in the North East. I had met him on a Canadian Website, the only one I could find at that time.

REDUCTIONS PLANS.

Ragnar developed a system ( Ragnar's story can be found on PMR&GCAuk North East Support, website *). Ragnar on a visit from Sweden to the UK attended a group meeting in the North East.

Following Ragnar's very informative talk, PMR&GCAuk North East Support wrote an article, which was published in 'You Are Not Alone' (newsletter).

In the booklet 'Living with PMR&GCA' written by patients for patients included a chapter on 'The Slippery Slope of Reduction'.

Eileen Harrison (PMRpro) and the Chair (GCA) had independently developed plans called. 'Dead Slow and Nearly Stop and 'Tortoise and Hare'.

These two plans had been sent out, free of charge on request, to many patients over the past 4 years. and they have worked for many patients.

Dr Sarah Mackie was interested and the following is the outcome which we published in our Newsletter

Dr Sarah Mackie a leading Researcher into GCA & PMR has kindly allowed us to inform you of progress being made. Dr Mackie emphasizes that you should always talk to your own Doctor. We have also stressed this whenever the plans have been sent to patients.

“We have been trying out the Dead Slow and Nearly Stop (DSNS) steroid reduction plan as part of the FACT study protocol.

The FACT study is a very small pilot study, funded by Vasculitis UK and approved by a research ethics committee; this study isn’t actually designed to test different steroid reducing regimes, but is an exploration into causes of fatigue in people taking long-term steroids.

We incorporated DSNS as an option on the basis that we know that DSNS, or something like it, is already used by many patients in the community and because we didn’t necessarily want to taper steroids over-fast in people who were experiencing fatigue. The study is still ongoing.

So far it seems that some patients find that DSNS suits them well, especially those whose symptoms tend to flare up when they step down their steroid dose.

However, DSNS will not suit everyone. DSNS is just one of various different approaches to tapering the steroid dose, and it has to be stressed that there’s no one-size-fits-all to this – you should always talk to your own doctor about what might be best for you.”

Dr Sarah Mackie, rheumatologist, Leeds.

* No longer exists.

[Theziggy]

You can find a list of acronyms used in this forum here healthunlocked.com/pmrgcauk...