Can someone let me have the Ragnar formula for reducing pred please. I am at present on 8 mg and have had 3 flares when trying to reduce. I have been on pred for 4 years with GCA.
RAGNAR METHOD FOR REDUCING PREDNISOLONE - PMRGCAuk
RAGNAR METHOD FOR REDUCING PREDNISOLONE
Hello hwigston
Ragnar in Sweden had repeated problems in trying to reduce from 5mgs and devised a regime by which he took the new dose on one day followed by the old dose for two days, which he then repeated once more. He used to cut his pills into 4 so was tapering in minute doses.
I also had a major flare at 5mgs necessitating an increase back to 10. When reaching 5mgs for the second time, my rheumy kept me there for 5-6 months to ensure the inflammation was totally under control. With hindsight it probably gave my adrenal glands time to catch up with their natural cortisol production. Rheumy then said I could start reducing 1mg a month again, but having now read Ragnar's success story, I decided, along with many other sufferers who had become aware of Ragnar's regime, to follow a similar routine to reduce from 5mg, only in my case much more slowly. I took the new dose of 4.5 on one day of the first week, two days of the second week, three of the third etc, taking about 7 weeks in all to reach 4.5 every day. I repeated this routine until I reached zero Pred. It was as though the body was tricked into not noticing the steroid withdrawal. Some people may find they can manage 1mg reductions - it's very much a case of finding what works for you.
PMRPro is following a similar routine, but with a slight difference, and I'm sure she will be along to paste it here for you soon.
The scheme I use progresses the reduction by taking the new dose for one day and having a reducing number of days inbetween on the old dose. It is spread over a much longer period so avoids having to cut the tablets as Ragnar did. Pred tablets are small and tend to crumble when cut and that also messes up the dose as well as tasting horrible. I have been told by a few people they find this a very simple way to work out what dose to take.
A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used a table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to. As it did for several ladies beforehand.
My reductions are VERY slow. I use the following pattern to reduce each 1mg:
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose
By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.
This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.
When I reduce by half a mg I prefer to make use of the 2.5 tablets. For instance, to take 5.5mgs I would use one 2.5 tablet plus three 1mg tablets. This saves having to split the 1mg tablets in half.
Did not experience too many problems reducing. As whatever dose I came down to made little difference! By this I mean that the pain and stiffness of joints stayed with me all the way to zero pred. It has taken several months in Club Zero for those pains to diminish to the point where I assume they will remain and are at least bearable! Not wishing to depress anyone, but I think it is worth putting up with and is just the price we pay to protect our remaining eye from the GCA which claimed the other. Good luck all with whichever plan you choose to adopt and persevere as it will gradually have lessening effect on your life. raymck
Ragnar's story and scheme can be found on this website pmr-gca-northeast.org.uk/st...
Ragnar also posts on pmrandgca.forumup.co.uk his postings can be found on the Club Zero thread.
We have also developed a slightly different scheme to the one posted by PMRpro. Send a PM if you want a copy.
I had GCA for 5 years and have been in remission for 18 months I followed Ragnar's scheme and then we tweaked it with a Consultant Rheumatologist.