My dr. just changed my prednisone to ;
15mg/day x2 weeks, then 12.5mg/day x2 weeks, then 10mg/day x2 weeks, then 9mg/day thereafter. continue reducing every two weeks by 1 mg.
Isn't being on it for 2 weeks too long to drop it by 2.5 mg ? What does everyone think?
Thanks
That seems like an extraordinarily optimistic taper. But a little context would help. Do you have PMR? How long have you been on pred and what was your starting dose? Do you have any significant PMR symptoms right now or are things as good as they are going to get? Does your doctor think pred is a cure for PMR? Because it isn't. All it does is damp down the pain-causing inflammation so we can have a life. PMR will go into remission in its own good time, hardly ever less than two years, usually closer to six, sometimes longer. Although with a slow and careful taper the symptoms can often be managed with a very small dose.
If, however, it's been decided that you don't have PMR and have only been on pred for two weeks I think it's possible to stop pred quite abruptly. I know others will be along with more information if that is your situation.
Thanks for the reply
yes I have pmr for 1year and 6-8 mos. Have been on prednisone since the beginning. Started at 20 mg in Nov. 2016. Was down to 6 mg 9/2017 approx. with a few flares along the way.
BAD flare March 2018 had me on 15mg for a week then to 10mg for a week been at 9-9&1/2 since then.
Was on methotrexate since the beginning and have been off of it now for 1-2 mos. I think that is why I am having the flare now. It got so bad yesterday that I called the dr. and she gave me the prescription I mentioned in my original post. From all that I have been reading it seems like it is a little too aggressive in tappering?
Hi Lin,
See from previous post you’ve been diagnosed for almost 2 years, and have had 4 flares.
To me that says, either you weren’t started high enough initially, or your Rheumy has tried to taper you too quickly, or both.
So couple of questions- what dose did you start on? Did you flare at any particular dose? What dose were you on at last flare? And is ‘new” regimen as a result of latest flare?
If this is to “recover “ from your latest flare then it may work back down to 10mg. But from then on the recommended taper is only 1mg per every 4 weeks. Some can’t manage that, and do 0.5mg every weeks.
Once I got to 6mg, I then did the 0,5mg per month and a slow taper - see below.
healthunlocked.com/pmrgcauk...
Despite that many Rheumies still think PMR lasts longer than 2 years if that’s where he’s coming from - the average is over 5 years! So no rush - see this from your side of the pond -
rheumnow.com/video/dr-kathr...
Started at 20 mg. with methotrexate. Flares were just kind of ups and downs, I knew enough to up the pred. 1-2 mg each time for a few days and that helped.
My last flare was at 9& 1/2 mg. Can't seem to go below 9 mg. However I stopped the methotrexate 1-2mos ago and I think that is causing problems in re-adjusting.
I took the 15mg yesterday and WOW did that make the difference. I am a different person from yesterday. I am awake and have little pain. (except for my pesky old back).
My brain is actually working.
Taking 15 mg for two weeks just seems like a long time to then take it take it to 12.5 mg?
Thanks for the input, sure do appreciate you all.
I believe there as a sort of formula to deal with flares, and that is to add 5 mg to the dose where you flared. (This is what I had to do last year, despite several attempts with smaller increases (I was in denial) and it worked for me. But it then, after a reasonably quick reduction in steps about halfway back to my previous best low dose it's taken months to get back to that dose). It's a good idea to stay there for a few days if it works, to clear out any inflammation, and I agree two weeks may seem a bit long. But I would also suggest you not drop by 2.5 mg, because it's entirely possible that you will suffer steroid withdrawal as you haven't done well with previous tapers. What if you tried dropping by only 1 or .5 mg every few days until you get to 2.5, stay there for a few days, and then carry on down with a similar slow reduction? You can probably get to 12.5 in the time frame your doctor suggests, but in smaller steps. And once you get to 10 mg,, which may well take longer than from 15 to 12.5, definitely not more than 1 mg at a time and only monthly. Have you tried any of the slow taper plans developed by patients? I see Dorset Lady has posted links. One or the other of these really have proven very helpful for many of us.
That sounds a fairly guaranteed way of causing a flare of the PMR symptoms. Maybe your doctor is unaware that PMR is a chronic illness and will require a certain level of pred (everyone is different, you are reducing to identify that dose) for at least a couple of years and for a median time of nearly 6 years?
It took me over 4 years to get below 9mg/day. You are not the only one!
Hi Linny3,
That sounds like a very aggressive taper. That kind of taper proved futile for my wife. Her new and improved rheumy has her tapering 0.5mg every 3 months, and that seems to be working well. She was diagnosed 2 years ago, but has had PMR 2.5 years. She was started at 15mg and is just down to the equivalent of 11.5mg.
Joe
Reading the comments you have generated, Linny, all the physician recommended tapers I have tried, have been too aggressive; the kindest one was 2.5 mg every 3 weeks and hold, and so on. That caused me vision loss, or I should say GCA caused the temporary vision loss, but on that taper regimen. The worst was 4 mg., all at once until next appt. Needless to say there will be no next appt.
I have been feeling pretty awful. I am tempted to bump myself up, especially because a big weekend coming up for my brother's 60th birthday in NYC. I want to be able to enjoy and keep up; theatre tickets, restaurants, walking (taxis if need be) and would like to get to Madame Taussad's wax museum. We only have about a day and a half.
My GP was the most practical in retrospect; his advice: the lowest dose at which you feel comfortable. I don't feel comfortable at 8mg, barely functional. Think I will go up to 10 and maybe even to 12.
I really think doctors have no idea what PMR/GCA feels like every day, day in and day out; and I really see no harm in going up 2-4mg of Pred, especially for a special occasion.
"My GP was the most practical in retrospect; his advice: the lowest dose at which you feel comfortable"
Not just practical - correct...
Thanks for the reply
I am feeling pretty good at the 15mg that the dr. just raised it to. Fatigue is bad.
Sorry you are feeling lousy. I hope you can make a decision that works for you so you can
enjoy your function. Sounds like fun. I have decided for my self; I am playing around with my dosage, to a degree . I don't think I will stay on 15 for 2 weeks. I'll see how it goes.
Take Care
Tapered too fast?
Reducing too fast / too slowly?
Taper Advice after too fast a taper
Tapering too fast with GCA ?
Is this a flare?
