Diagnosed with GCA in March 2015 and currently raking around 5.5mg a day using the
this method of reduction :-
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.
I am only reducing by 0.5mg at a time and it seems to be taking forever i.e 0.5mg reduction every 52 days. I am considering reducing by 1mg each time. Just wondered what your thoughts were.
Written by
AnthonyH
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You can always adapt the plan - as we're always saying they aren't set in stone, you do what's best for you.
The original DSNS was devised for people who found it very difficult to reduce - not everybody needs to go that slow.
If you aren't having any problems you could always come in a 1 day new dose , 4 days old dose - that would cut the time a little. Or try following -
1st week - Sun & Thurs new dose
2nd week - Sun, Tues & Thurs new dose
3rd week - Sun, Tues, Wed, Thurs new dose
4th week - Sun, Tues, Wed, Thurs & Sat new dose
5th week - new dose completely.
If you feel okay at end of 5th week then start procedure again.
Personally I would stick at the 0.5mg, much easier on body, and reducing may well get more difficult as you get lower. The percentage drop is higher each time - so at 5mg a 1mg drop would be 20%, whereas a 0.5mg drop would be 10% drop and so on. For some, that's a big difference.
As someone who reduced at a snail's pace from the 5mg dose, taking some 7 weeks to achieve a minuscule half mg drop, I do appreciate that feeling of not getting anywhere. I had hardly any problems reducing from the 40mg starting dose until I reached 5mg when I hit the proverbial wall, and had to increase back to 10mg to get control. Hence the snail's pace reductions once I reached 5mg second time around.
Of course, there will be people who can successfully reduce more speedily, and you might just find that 1mg decrements over seven weeks may work for you, especially if you are feeling symptom-free at present. It's very much a case of trying it and seeing how you feel. If you succeed then you still have the option of returning to the 0.5 reductions to get you safely through the final very stages when each drop will become a higher percentage which might prove difficult for the body to cope with.
As the others say - nothing is written in stone and the only way you find out is by trying. The original does suggest trying a shorter path - starting and finishing at 4 days interval. And the 0.5mg step is for the people who really struggle, 1mg is more usual.
However - at this level you are now reducing slowly to give your adrenal glands a change to take up a staged return to work.
Thanks for the reply guys. I haven't suffered any relapses, so I think I will persevere with current plan. Most of the bad side effects; and I've suffered most of them; have disappeared at the current level although still get very tired and forearms are still susceptible to bruising and tearing easily.
I too got impatient at the slowness of it all, at 4mg went down to 3.5 quicker , rather than allow my body to get used to it. you know what........ my body was NOT HAVING THAT !
Sadly it went pear shaped but after messing about am now on 4mgs again and my Rhumy said 'stay there till Dec then we will start again' . Can so sympathise with feeling it so slow, i've learned the hard way .
Good luck and many thanks to all who keep us trugging along the tapering journey.
I've been using the same method, but starting at 1 day new dose, 4 days old dose and reducing by 1mg each time. I thought I was doing OK, but have experienced my first flare of PMR at the 4mg stage, so it's back up to 10mg to clear the inflammation and when I start tapering again, it will be 0.5mg each time. I've learnt the hard way! How many times have I read here "It's not slow if it works"?
Hello Anthony, I too am going at the snail's pace of 0.5mg each time, and following the wonderful DorsetLady's plan (the 5 week cycle, which she outlines in her reply to you).
At times I'm very tempted to try a whole 1mg drop - but then I remind myself how depressing it was when I flared and had to go right back to my original starting dose. I swore then that it would be a case of creep and go for me, in an effort to keep going in the right direction, helping me to feel positive. So far it's worked apart from one tiny blip, when I had to increase by just 1mg for a short while.
Definitely don't want to risk having to increase the dose to cope with a flair. I've had to get to this stage to help shed the weight gain besides all the other symptoms and I don't want to go back there again. Decided to be patient and stay with original DSNS plan.
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