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.
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I agree, Dorset Lady's reduction plan the best and glad to hear of your shortcuts to that plan. I had no flares with her plan. I am at 2 mgs currently and started 1/2 mgs reduction from 10 mgs.
If you are using non-enteric coated Pred and start having symptoms of PMR or adrenal insufficiency, consider cutting the 1mg tabs in quarters and use a 0.25 +/- 0.05 mg (estimated error on sizes of those pieces). Have you had a Basal Cortisol test done?
I had a cortisol test in July of this year in the hospital just after hip replacement that was done in the morning before taking 3 mgs. It showed cortisol reading (existence?) in the middle zone of the possible reading (which I don't currently have). I don't know if that means much as I did not stop pred for any length of time. I continued reduction a month or so after op and have had no flare symptoms so far. I do wait sometimes a month or so before the next reduction.
I’m happy you are down to zero. I’m only on Actemra now. When I reduced my rheumatologist kept telling me i could reduce much faster than I was. Even though I was desperate to get off pred I was afraid because of remarks from people on here. He was very nice but somewhat disgusted with me so he said to do what you want. So I did. I went at my own pace. I’m glad I did
My rheumy was very keen it should be slow, not more than 1mg at a time. I've just gone by how I feel - and it is notably easier now after 6 months on TCZ, much harder at first.
The good doctors understand statistical results from studies are just probabilities and not always indicative of their patient. It can help them formulate the best custom approach for their patient. Prednisone can have some nasty side-effects especially the longer one is on it. My Rheumy knew nothing of a 25 gm total accumulative dose recommended limitation (after 2.5 yrs my accumulated dose was 8.34 gms and I started at 80 mg/d). I maintained a Pred inventory spreadsheet that tracked my daily doses, including changes due to flares.
Like when Doctor might state have to be 50 years old to get it. Even if sort the ages from low to high and the lowest age is 50, depending on the actual data distribution and variability looking at a 95% confidence interval, statistically the predicted possibility could be 30 or even 35. Regardless, we’re all biological entities and no absolutes!
I used to not-question doctors (PhD, or PhD/MD) until I worked alongside them in a research facility. They know and understand their area of expertise better than us, but, questioning them (in my case to attempt to understand the mechanisms) often resulted in them considering another aspect as were trying to explain it to me where I could understand. That showed me they don’t know all and I never assume they do. If something doesn’t make sense to me, I ask questions and often the doctor has had to say, “I don’t know, I’ll have to look into that.” Or if a crappy egotistical doctor they’ll say, “That’s not applicable.” Or “Not an issue.” Those later types I look to replace ASAP.
How slow were you from 2mg to 0? I'm taking it 1/8mg at a time, but even so....have periods of being totally wiped out for days at a time. My rheumy also expected me to go rather faster, though I don't think he particularly cares. I have been on Actemra for11 months.
It took me approximately 3 months. I went in 1/2 increments at the end. I was never tired but the joint and muscle aches were awful. I hurt everywhere. Fingers, toes, legs, back etc. the prednisone hid my arthritis and bad back and it all came back with a vengeance. Most of those pains took a couple months to dissipate but of course I still have arthritis and a slipped vertebrae
MTX did nothing for me too. I got myself off the prednisone and the MTX about 1 month ago. I was on prednisone for 10 months and methotrexate for 6 months. My rheumy put me at the 25 mg/ wk of MTX, which is the max dosage she said, I did this for about a month and then I said forget about it. There was no improvement. I’ve been taking Ibuprofen 2-3x/ day 1600 mg total. It makes things manageable. I know the risks involved with taking daily ibuprofen, but I feel like it’s the lesser of two evils. Trying to stay positive and not acknowledge the pain. I also am trying to exercise regularly and that seems to help. About a month before I stopped taking the Prednisone, I developed bad carpal tunnel in both hands. It’s been 3 months but it seems to be getting somewhat better. I didn’t follow my rheumy’s directions either, I went by feeling. I’m just glad I’m off it. I’ll give it some time and if things get worse then I’ll try something different.
I’m surprised Ibuprofen had any impact on your PMR pain. It had absolutely no impact on mine only Pred negated it.
Interesting about the carpal tunnel syndrome. During my last year on Pred, I started having issues and had a carpal tunnel release done to my left hand and 4 weeks later to my right. It was done by a single small incision at the wrists.
Now I’m dealing with 2 trigger fingers in my left hand. Already had the max of 2 injections at the base of each finger. My remaining option now is to have the hand surgeon operate. 😟
Ibuprofen (600 mgs) does relieve some of the swelling / pain. I haven’t added acetaminophen to that at this point.
I haven’t been diagnosed with PMR, but my symptoms match up very well except for my age. The Carpal tunnel really came when I got below 10 mg of prednisone.
It’s a 5 week program whereas can extend by repeating week 5 as often as you wish, which is basically stay at the new dose for an additional time period before repeating the 5-week schedule to a new dose using whatever step assigned.
It was interesting, for me, as I observed a pattern that if I was going to have a flare it was usually on Thursday evening (I took my Pred dose in the morning) of week 3 into the taper. At higher doses where the pain was 3-5/10 I would take additional Pred that evening so the total Pred that day was equivalent to the old dose and I’d hold for about a week or 2. Usually the pain would go away by the next day or two at most. I used Sun as day 1. It is so simple I still know it off the cuff.
See below. The days indicated are at the New Dose, remaining days at Old Dose
Wk 1: Sn & Th
Wk 2: Sn, Tu, & Th
Wk 3: Sn, Tu, W, & Th
Wk 4: Sn, Tu, W, Th, & Sa
Wk 5: Sn, M, Tu, W, Th, F, & Sa
Now, if feel good, repeat Weeks 1 - 5 with the next step decrease as New Dose. Or just repeat week 5 until feel comfortable physically and emotionally to try the next step.
If my flare was very minor 1-2/10 pain and didn’t increase, I’d try repeating week 3 until zero pain then do weeks 4 & 5.
I'm on Actemra, into my 3rd year. My Rheumatologist is annoyed that my taper has been so slow but .25mg, holding for around 4 weeks, is working so far, down to .5mg currently and holding for a while. I have been fortunate to access long term Actemra so I haven't felt the pressure to taper more quickly. Rheumatologist now wants me to taper the Actemra!! She's so annoyed by my decision to take control as I continue to follow my own instinct after all I have learnt on this forum.
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Different tapering protocol
Tapering after a flare
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