The slow way takes 52 days and I would like to reduce by 0.5mg a month. I got down to 10 mg daily in December and then had a flare and was put back to 12.5mg. Since then I have been yo-yo-ing between 11. and 13.5 mg. I have been on 12.5 mg for the last month.
I was diagnosed in Feb 2013 with Temporal Arteritis.I am now 83.
If you mean shorter than the one I have posted, I do say in it that you do not have to start at 1 day new/6 days old dose. It is perfectly possible to start at 1 day new/4 days old and proceed from there.
However - if you reduce 1mg in 52 days, that is 0.5mg every 26 days which is what you say you want to do. So there isn't any need to change the scheme is there?
If you were diagnosed with GCA in Feb 2013 then to be down to 12.5mg by now is actually quite fast. It should take about 6 months to reduce to 20mg from starting (you need 6 months at high dose pred, i.e. over 20mg) and the reduction from there should be at 1mg/month to avoid flares. In GCA flares are very common in the first 18 months or so and are almost always because the dose is being reduced too fast. If you reduce too fast or too far and have a flare you have to go back to a higher dose - you have lost all you thought you gained by reducing quickly.
Thanks for clarifying. I thought I was reducing by 1 mg every 52 days on this scheme. Like you PMRpro I have a biomedical science research background but goodness knows how I managed as I always struggled with figures! My new dose is 11.0 mg and old dose 11.5 over a period of 52 days so I guess that means I am reducing by 0.5 mg/month, which is what I wanted to do. I found 1 mg/month gave me pain and I'm fine on this VERY slow reduction.
It doesn't matter how much you reduce by - it's that you do reduce that is important. If a slower reduction works then that is better than a faster reduction that doesn't work. It's often the docs who want to rush at it and communicate that to the patient. There isn't anything better at the moment - let's make the best of what we have!
PRMpro, i have wanted to thank you for sharing your reduction plan. The first few times I have 1 day at the new dose I have a bit more discomfort, but it's then back to the old dose for a few days. By the time I get down to 2 days on the new dose, my body seems to be saying, "OK, I see what you have in mind. I can go with this!" So far, it is working brilliantly. And I know when/if it doesn't, I am potentially only a mg. away from what was working so I can distinguish between a flare and pred. reduction pain. Just having a plan is a great comfort and helps keep me positive and on course. Thank you!!
Thank you so much - that was the thinking behind the plan and I'm so pleased it is working for other people! I too feel a bit "Ooh-er" the first day or so and then, like you, my body decides to play by the same rules! I've just started on 5 down to 4 since the weather is marginally better - the first day I felt decidedly strange but was back to normal dose the next day and fine. Then the weather played up and I felt the same - so I will try the next day tomorrow!
Good points about the 1mg reduction. I am away for three days this week, so will risk trying to reduce by 1mg (instead of 1/2mg) next week and see what happens ie following your regime.. How much would you suggest increasing it by if I DID have a flare? I have been told 2.5 mg and 0.5 mg by two different GPs! The symptoms were violent headache and sickness/retching, lasting for just one day. The next morning I felt tired, but OK.
Many thanks.
I'd be of the opinion it might not have been a flare! Having PMR/GCA doesn't excuse you from having something else - a migraine or an upset stomach or a virus. Flares take longer to settle. They also don't usually respond to a 0.5mg increase! If they do it probably wasn't a flare but something else and it was all coincidence. Some docs suggest adding 5mg to your current dose for a few days until the symptoms have subsided and returning quite quickly to the previous dose where you were OK and staying there for a while.
No, it was definitely a return of arteritis - exactly the symptoms which landed me in hospital 16 months ago. My new rheumatologist muttered something about possibly having to increase the pred. by more than 2.5mg, ut didn't say anything about when or how I could get back on track.
Everyone's comments are most helpful.
Trenny
I had two flares within the first 18 months of being diagnosed with GCA , each time I went back up to 40mg and then quite quickly down to where I was. The golden rule is hit it hard and hit it fast.
I used a slightly different reduction plan than PMRpro, if you want a look see send me a PM with your email address.
GCA in remission for 18 months now.
Sorry, but what is a PM? Can I put my email address on here?
Private Message, Trenny. If you look at the top of the page there is an envelope beside your user name. Just click on that and you can message others without the whole world knowing.
Ah... I have sent you one now.
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