REDUCTION PLANS: PROGRESS.

[jinasc]

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 (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:

PLEASE READ THE FOLLOWING CAREFULLY, I cannot print it in bold.

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.

POSTER’S NOTE

10 years ago, research was being undertaken but much more is now being done. Once the 3 Charities PMR GCA UK, PMR & GCA Scotland, PMR&GCAuk North East Support, were started with the aims of Support, Raising Awareness and Research, progress has been and continues to be made into Cause and Cure. All are run by volunteers who work hard fundraising to support the financial running of the charities and research projects. There are also support groups throughout the UK.

Visit the websites just insert PMR&GCA into your search engine and you will find 4 websites the UK, the North East, the North West and Scotland. You will also find out if there is a Support Group near you. You might like to join or volunteer to help.

[DorsetLady PMRGCAuk volunteer]

Hi sambucca,

Although the original studies were done in association with the fatigue experienced by patients trying to taper, apart from my well- documented problems between 6-3mg, I didn't suffer from fatigue when I reduced.

What I did find very difficult to deal with was the steroid withdrawal symptoms following every taper. That's why I started my slow tapering plan (based on those already circulated, but adapted to suit me) once I'd gained more knowledge of my illness and treatment - but that takes time.

A slower taper might something that GPs or Rheumies could highlight to those new to PMR/GCA and Pred. Initially I think many patients worry when pains etc return and don't know the difference between withdrawal symptoms (if they are even aware of those) and a flare.

Most of us are made aware that we mustn't stop Pred once we've been on for a few weeks, but perhaps don't realise the implications of dropping from one dose to another 'overnight' - which we assume is the normal way to do things!

Or perhaps we just rely on the charity to continue its excellent work to advise others. Your work, and advice is much appreciated by all. Thank you. 💐