TAPERING PLANS. A bit of History.

[jinasc]

In 2017, when the PMR&GCAuk North East Charity was still in existence the following was published in their Newsletter , 'You are NOT Alone'.

In the light of a lot of discussion on tapering plans, I thought this might be of interest.

REDUCTIONS PLANS. .

Ragnar developed a system 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 (PMR) and the Chair (GCA) had independently developed plans

called. 'Dead Slow and Nearly Stop and 'Tortoise and Hare'.

These two plans have 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:

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

[DorsetLady PMRGCAuk volunteer]

Do you have the link to your original charity website and Ragnar’s story - or explain who he is for newer members not aware.

Searches for website only bring up current charity.

[jinasc in reply to DorsetLady]

Sorry I should have added that the charity closed down and a year later the website was closed. I have edited the post and taken out the reference to the website.

Ragnar, I met him on a Canadian website, the only one running a PMR & GCA thread. The name was the Good Ship PMR & GCA and Ragnar was the Captain and I was the donkey man and he has posted on here, I think, rarely always posted on Saint Lucia's day.

Ragnar had both PMR & GCA and lives in Sweden, he had had problems with reducing and as a clever man had worked out a system.........PMRpro and I both tweaked it and DSNS and T&H were born. Then came the problem of convincing the professionals that patients have brains................all these years later ......................nuff said.

We had the only website at the time, the national came later. Then HU and that has taken off like a rocket.

BTW it is the Chinese Year of the Tiger................🐯 🐅 guess who 😈

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Yes he replied to one of my posts about GCA, and we had quite a chat - seems very nice man!

[bakingD]

Hi What treatment were you changed to out if interest??

[PMRpro Ambassador]

If you had ever read it properly you would notice that at the short end of the intervales it takes a month to get from every day old dose to every day new dose. Exactly the same as dropping overnight, But a lot more comfortable. The vast majority of patients with PMR don't get your advantage of access to Actemra.

[HeronNS]

Actually, if DSNS works for a patient and PMR really does go into remission you can be done and dusted in less than two years. I was at 3 mg by the end of my first year. In my case (obviously) PMR did not go into remission according to the standard model and I was at 1.5 at the end of the second year. What DSNS allowed me to do was reach a very low "best dose" to maintain symptom control and with a few minor hiccups kept me stable for several years. Attempts to taper further invariably failed, including a brief flirtation with zero in 2020. I would like to have seen a more positive statement about the usefulness of DSNS, but as they say, they weren't looking at slow taper effectiveness so much as dealing with fatigue symptoms. Not sure any taper system can help much with that. It is what it is. What taper system would they recommend instead of DSNS (or T&H) I wonder?

[DorsetLady PMRGCAuk volunteer]

T&H… The tortoise and the hare as in Aesop’s fables.

[HeronNS]

Tortoise and Hare, which was mentioned earlier in this thread which is why I mentioned it. I was responding to your commment that the researchers might have thought DSNS makes it look like you'll be on pred for a long time, implication being that DSNS actually slows down being able to discontinue pred. Just wanted to restate the obvious that DSNS does no such thing! In fact it has probably saved me from a great deal of pred I'd have needed had I tapered according to standard medical advice.