Its Friday the 1st July.

[Burnley1959]

1st of the month means reduction day, started this affair with Preds some 8 months ago on 40mgs a day, my consultant has asked me to reduce by 5 mgs a month ( although I have not seen him yet, appointment is next week, feel like I'm going on a first date ) so from today I'm down to 20 mgs. Fingers crossed with a good wind and a hearty breakfast things will be ok.

I still feel weak in the body but its something I can cope with, walking and swimming seem to be my default, cycling has taken a back seat seat (where I live it is very hilly, and them there hills are just to much). Still prone to do the river dance dance now and again ( foot drop ) which amuses the wife no end.

So next week Rheumy consultation followed by a EMG/NCS nerve conduction tests on my arms and legs, then off to see the cardiologist ( think I`ll get a season ticket). So a busy week, but the thing that is getting me giddy is the reduction of Preds.

finally here's a little poem from, in my opinion one of the funniest men ever. Enjoy

Smile: A Poem by Spike Milligan

Smiling is infectious,

you catch it like the flu, When someone smiled at me today, I started smiling too.

I passed around the corner and someone saw my grin. When he smiled I realized I'd passed it on to him.

I thought about that smile, then I realized its worth.

A single smile, just like mine could travel round the earth.

So, if you feel a smile begin, don't leave it undetected. Let's start an epidemic quick, and get the world infected!

[Theziggy]

Just remember that tapering isn't a race it is a marathon

[123-go]

Burnley, I'm laughing too much to give a coherent reply but.... 5mg a month??!Pleased to see, though, that there is a multi-disciplinary team doing all the right things.

[Burnley1959 in reply to 123-go]

If I have made just one person smile then my work is completed. Thankyou

[Longtimer in reply to Burnley1959]

Made me smile... I loved riverdance!!.....good l uck...

[Burnley1959 in reply to Longtimer]

Cheers.

[jinasc]

Normally no more than 10% at a time is the way to go. Then once down to 10mgs a good idea is to use one of the tapering plans.

However, if you are reducing by 5mgs at a time, I suggest you clear the decks for 4 days after the dose to give you body time to adjust, without doing much at all.

It might be an idea to take a copy of DSNS with you and this also (just in case).

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 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]

5mg a month might be okay on GCA higher doses -but from now on it needs to slow down. 2.5mg to 10mg MAYbe manageable, but don’t bank on it… From 15mg I did 1mg a month, then from 7mg -0.5mg. Just saying,

[Burnley1959 in reply to DorsetLady]

I live in hope Mrs, hope your keeping well

[DorsetLady PMRGCAuk volunteer in reply to Burnley1959]

Good thanks…been for my Pilates fix - now having coffee and totally agree about Spike’s smile.

[Dochaz]

Love the poem! Would you consider an electric bike? I couldn't live without mine as we have hills and vales all around us. I was not a fan of cycling but since I got my electric one 5 years ago I have rediscovered the joy.

[Burnley1959 in reply to Dochaz]

Not yet I'm living in hope to be fair, riding on the flat is fine its just the bloody hills, I did a 35 miler a couple of weeks ago on the flat which was fine, unfortunately of fortunately I have Pendle hill looming over me which is lovely but a little to steep at the moment. Down to do a charity ride next month ( which Ive had to cancel) cycling from France to burnley approx 600 mile over 4 days, hopefully next year.

[DorsetLady PMRGCAuk volunteer in reply to Burnley1959]

Something to work towards!

[Dochaz]

Husband was recalcitrant at first about electric, but "caved" eventually. As have a number of our friends. No shame!!! Just the enjoyment without the pain. Hope you manage to do the charity ride next time and best of luck with everything.

[Charlie1boy]

Loved the poem. Good luck for next season, by the way. I’m a Man Utd supporter, which is very hard work at present, and was hoping Everton would get the chop!!!Take it really slowly with your tapering - I’m seven and a half years in, and have followed the advice on here throughout. It has been slow, but no flares.

Good luck.

Paddy

[DorsetLady PMRGCAuk volunteer in reply to Charlie1boy]

Slow and successful beats fast and failing very day!

[Burnley1959 in reply to Charlie1boy]

Cheers Charlie1boy. We have some cracking derbies this year then hopefully back in the promised land, although saying that I kinda like watching the championship better than the premiership, to much ballerina classes going on, saying that I will miss the big game players.

[Charlie1boy]

👍