Asked to post this as a separate post:
Took me 3.5 years to get to zero mg Pred, MTX did nothing for me. It’s been about 8 weeks now and still in remission. The last 10 months I took over control. I got up in his face after a flare that was completely his doing. At that time I told him from there on out I’m following the disease and not some arbitrary statistical timeline. He backed off and let me be. Still saw him quarterly with blood workup. He’d ask what dose I was on, and whether I needed refills. So, it’s like this. I was on DL’s 5-7wk simple taper, no more of the 4 week process, unless things were going very well. In that case I skipped from week 2 schedule to week 4, and then the week 5 at new dose. If I felt any PMR pain, I stopped that taper, and reverted back to Old Dose. I literally used a 10% reduction. in other words, if not zero PMR pain I did not reduce! Didn’t care what that dose was, follow the disease. It takes what it takes at its current activity level. I was using 0.25 mg steps when I hit 4 mg. Took me 7 weeks to go from 2.75 to 2.50 mg. Day 5 of Week 3 I felt a very minor pain, so I tried repeating Week 3, repeated twice before I got past day 5 with zero pain and the do weeks 4 & 5 schedules. (I didn’t go back to old dose for 2 weeks because the flare was only a 1-2/10 in intensity. My interpretation is I was very close to optimal dose). After that, no issues, just kept dropping 0.25 mg over 5 week periods.If having issues decreasing, I’d suggest doing the dose where you last did not have any PMR pain and stay there 2 weeks. Then, instead of attempting the previous decrease amount do it half or quarter of that (eg 0.5 mg instead of 1mg or even try using 0.25 mg), see if that works.If you’re doing the NICE method, I was started on that and hated it. If think about it, that process doesn’t make sense. Take a set dose for 4 weeks, then suddenly decrease it. The day after I felt out of sorts, probably due to the sudden decrease in cortisol produced then 2-3 days after that, possibly have a flare, and the intensity of that flare depended on the magnitude of dose reduction. 2.5mg drop every 3 weeks from 20mg to 10mg? Ah nope, managed that to 15 mg, then ended up doing 1 mg decreases. Also at this time I switched to DL’s simple taper.The smaller the step decrease and the slower a new dose is adopted, the lessor risk or intensity of a flare, and shorter the time to recover.🤷🏼♂️
Sidebar: I had it a little rougher I think due to being given 80mg of Pred in the ER. 60mg the next 2 days and 4 weeks later decreased to 50mg. Then an attempted 10mg decrease every 4 weeks. The feeling the next day after the decrease was wicked at these doses. Hard to describe, light headed and whoozy probably best. Also, the flares 3 days after that, when I had them were painful, like 6/10. Phone call to Rheumy put me back to original dose for a week, then he had me try 5 mg and if that worked held that dose for 4 wks and attempt 10 mg again. So, one can understand how I came to hate the NICE. Method. Reading DL’s 5-7 week simple taper was a God-Send and I immediately switched (no didn’t ask Rheumy). Best decision I ever made. 2nd Best decision was realizing I could minimize the intensity of any flare by reducing how much was reducing, ie if I over shot, it would be less . Pain less (ie less inflammation build up) and quicker recovery. Longer to get to the optimal dose? I think I could argue not. If doing smaller decreases and stable, quite likely can skip week 4 of the taper schedule and go straight to 7 days at new dose. If overshoot, it’s going to be minor. At that point you have to experiment to see if the disease is holding at a steady intensity, or is it lessening. If you’re that close to optimum one can afford to test it, going immediately back to old dose that same day if necessary if pain appears that quickly.
Question about flare ups
Different tapering protocol
Tapering after a flare
