Slow method of reduction

[Trenny]

Can someone remind me who devised the slow method of Pred reduction, please? I gave a copy to my Rheumy recently.

[Celtic PMRGCAuk volunteer]

Trenny, it was initially suggested by a Swedish gentleman on another forum some 7/8 years ago who hit on the idea of trying to reduce on just a couple of days a week rather than every day following the difficulties he repeatedly encountered especially in trying to reduce from 5mg and below.  Since then a few of us tried reducing in a similar way, even in just 0.5mg decrements in some cases, and have found it has proved very successful.  I am someone who followed his advice after reading of his success when I, too, was having difficulty at the 5mg point with flares.  I did it even more slowly, taking some 7 weeks to taper by just half a mg, taking the new dose on just one day of the first week, two of the second etc and was finally successful in reaching zero Pred more than 4 years ago now after a 5/6 yea;journey.  PMRpro who posts here devised another slightly different plan and yet another plan is circulating from the N.E support group and one of those is being trialled by a hospital in the N.E. of the UK.

[PMRpro Ambassador]

I devised this one, currently being used in a clinical study:

healthunlocked.com/pmrgcauk...

on the basis of Ragnar's original which was for below 5mg.

There is another very similar one from the NE support site who will send out copies of both on request.

[Shastring in reply to PMRpro]

Here in the US I've been told  by three rheumys that they taper in 5mil  increments and no less so I'm really having a hard time here getting a Dr to understand all this. I am literally planning on doing what I'm hearing works here for most of you and just not listening to them because I feel they are plain ignorant. I contacted the National Arthritis Foundation here and waiting for a reply. I wanted to know if they were familiar with PMR and how it's being treated here in the states and if the had any  additional info.

[peanuckle in reply to Shastring]

I know of three women in three different States who have been given different information and treatment.   I live in Canada and my doctor is South African and he diagnosed me right away (5 yrs ago).  Most doctors here don't know much about this disease.  You get more info, advice and support on this website that you can get anywhere else.  

[DorsetLady PMRGCAuk volunteer in reply to Shastring]

Good idea. There have been a few comments on here about US Rheumies being more 'difficult' in their approach than their UK counterparts.

Hopefully, someone from your side of the pond may be able to provide with some positive feedback! 

[PMRpro Ambassador in reply to DorsetLady]

Currently surrounded by rheumies at a meeting! The American ones are a bit -um - brusque! At a break out group yesterday to discuss PMR less than half the group (not all rheumies mind) had heard of it. And there was a decided reluctance initially on the part of the moderator to "ask the patient" until others suggested it. Then he thawed a bit...

The following discussion in the main assembly was a real eye-opener. They don't understand it and they don't want to understand it. Dinner and discussion for about 3 hours with "my" research team's leader was far more fruitful...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Interesting, look forward to hearing your summary idc. I'm sure you managed to get the patient's view through to some though.

I guess it's the age old scenario as we've both said before - it's perceived to be an 'old persons' illness, and nobody is going to come up with a miraculous cure and be recognised as a hero.

Just hope they don't succumb to it in later, or not so later, life!

Enjoy!

[Caro12line in reply to PMRpro]

I'm using this Dead Slow method and it is working very well for me. I record everything on a spreadsheet ..Pred dose, CRP/WBC, other things like infections, dental work (broken bones!) etc.. And I give my Rheumy the sheet, with my ongoing tapering plan and they just leave me to get on with it.