I am 16 months into PMR. I am starting a slow taper today from 10 mg to 9 mg. Looking at my calendar, it has taken me almost 12 weeks to recover from a flare!! I was going along great...10, 9, 8, 7...feeling good...Then 6 mg and I crashed and burned! I received warnings and advice about tapering, but did not realize how severe a flare can be...and most importantly what to do when you are in a flare! I tried to wait it out, and then slowly upped the prednisone instead of going right back to 10. I now know how cautious to be when I reach 8 mg again....will go even slower.....05 mg each step.
Thank you to all of you that coached me thru the flare!
P.S. Saw a friend recently who was like me last Christmas wth the PMR. She is now on 2mg. and feels like a new person..no pain, no fatigue. She has had the PMR for 26 months! Hope!
Good luck - it's a mistake you shouldn't make again but don't get complacent! Lots of people do it several times!
Hello Kathy, yes I suffered a flare in December last year. I also believe that I learnt a lot from it, one being I to hung on in there thinking, hoping the pain would go instead it just got worse.
i now reduce only .5 each reduction and I sort of follow Eileen's dead slow reduction plan. I am currently at 8mgs. I will attempt my next reduction second week into August and like everyone keep my fingers crossed that that taper goes well.
all the best, christina
I just reached 10mg for the 2nd time since sept 2014. First time I was in London on a family death and mistook a problem walking for a flare and went back to 15. Now, trying to make my new Rheumy happy, I am at the threshold again and will not go along with anything over a 10% reduction. But I do recall 10 being a point at which a longer wait is common. How long?
The rheumatology group in Bristol wrote a paper where they suggested a year at 10mg. Doing this achieved a flare rate of 1 in 5 rather than 3 in 5. But I believe that if you reduce in tiny enough steps, using something like the "Dead slow and nearly stop" reduction scheme, you can reduce flare rate without spending quite so long at 10mg, All that long wait is achieving is delaying getting to the tricky point of your maintenance dose for the longer term. It seems to be working for the people who use it.
Hi everyone has anyone noticed that patient emails are being displayed differently on their screens or is it just my screen? Christina
It just started - all I can say is YUK! It doesn't add anything at all...
Hi Eileen, couldn't agree more. Why has everything got to be updated or upgraded. Our local council has just updated our online planning, now I can't find anything. What happened to ' don't touch what ain't broke'. Regards, christina
Gone again - maybe they heard us!
Crikey! What is going on? Now I feel much happier. Christina
Hi i have reduced from 10mg to 9mg using Eileens Dead slow method, i have been on 10mg pred since January of this year, and will try for 8.5 now i am going in .5mg reduction instead of 1mg, hope all goes well for you. Regards Mags
Thank you Eileen. If my reduction today. Is problem free, I'll hold it for a month and use the very slow method.
I wish I had the time to stay six months at 10, but at 84 I would like to see what its like at very low or zero. Thanks.
I know! I should write a reminder on the palm of my hand!
Write one for the door of your fridge - the tortoise won the race...
We all would - but I'm finding 5mg perfectly acceptable! No side effects I can identify and feel well - was OK at 4mg but better at 5mg. It is a low dose and doing very little harm. If I'm on it for 10 years that's fine by me.
What is better - a good life at 5mg or a less good life at zero?
Eileen, what symptoms did you have when you dropped to 4mg but decided to go back to 5?
I'm still confused on symptoms. What symptoms do you have at 5 mg? If you don't mind me asking, or if you want to share?
Thanks, Layne
At 5mg nothing at all really - I'm probably not as fit as I could be but then I'm 10 years older than when PMR first reared its head. We have just been to China and I did a 12 day tour with hundreds of steps and walking around sites in heat in the low 30s for the first few days. It was cooler on the Yangtse but the humidity was even worse - and we were on a boat so stairs all over the place. The day at the dam was HOT and a load of walking. We went out in the morning and got back late afternoon - no rest except sitting to eat lunch which seemed mostly to be upstairs! I was fine. The last week was at a conference - still no problems though I didn't go out very much as stepping outside the door was like entering the steam room. One afternoon we did the Yellow Crane Tower in Wuhan - google it, even normal tourists complain there were way too many steps to get to it! I got to it, visited the bell at the top of its steps and climbed to the top of the Tower. 34C/93F and sun is warm and we did 3 other sites too!
At 4mg I had achey biceps and just didn't feel quite so good - nothing I could really put my finger on though. The achey bicep had reappeared at 3mg which I reached for several weeks, it was better at 4mg and is gone at 5mg despite dragging heavy suitcases around for the last 3 weeks. On a purely financial note, 5mg is half the price of 3 or 4 as I need just one tablet instead of 2 to make up the dose - saves me prescription charges and the healthcare system the cost of the drug...