Tapering off of Prednisone

You are tapering too fast. As mentioned before, this is not a race.

I was at 2 pills of 4mg methyl prednisilone (= 10mg reg pred) and my rheumy wanted me to go down to 1 pill. I balked, said that was too much at once. So we compromised at 1 pill one day and 2 the next. Said to call in if I had problems. Seems like he doesn't know about pill cutters. Well, surprisingly, I did ok. So now after 3 weeks, I am going to 1 pill one day and then 1 and half the next. (You see I do have a pill cutter) I hope to be at one pill a day when I see him in February. My top half is fine and has been for awhile. But having all sorts of pain and weakness in my thighs and stiffness in the muscles, too. If it isn't PMR it is sure doing a good immatation. Rheumy wanted my nerves cheked (seems my lumbar spine is "bad"). So had EMG and neurologist said nerves are fine and that I had a high tolerence to pain. (That's what 65 years of riding horses will do to you.) So, what to do next? Any ideas?

I started at 65 and breezed down with 5 and 10mg jumps. May I say that the last 4 have been a trial. Alternating as others have done 5/4/5/4 then 4/4/4 for a few weeks then 4/3/4/3 etc until I can stay awake all day — then continue the descent. Every time I dropped I found myself with exhaustion and fatigue leading to my falling asleep sitting up while reading. This lasts for 1-2 weeks. Then a few weeks awake and down I go again…
Right now I am at 2 with sleepy days. As soon as I have 5 consecutive good days I can drop down again. Tedious, but I am on a trajectory that will have me prednisone free.

I am 55 was diagnosed at beginning of November 2022 - started at 15mg prednisone had to go up to 20mg then back down to 15mg. I am at 12.5 mg now but pain creeping back in mostly in shoulders/neck and behind my knees. I really don’t want to go back up to 15mg if I don’t have to. I am meant to go down to 10mg this week but my Rheumatologist is letting me go with how I feel pain wise. I have had some side effects with the higher dose of prednisone and also just diagnosed with osteoporosis which was a big surprise for my specialist and I as I am (or have been) very fit, healthy, no osteoporosis in my family…. So now have to have an infusion to strengthen my bones. I also have started getting headaches and not sure why…. So if anyone else has just tried to battle through the pain creeping back and keep with the tapering I’d love to hear your story. Thanks!

Hi @michwest, When I have an increase of pain like you mention, I also didn't want to go back to the previous dose. It sounds like you have 2.5 mg tablets. Do you also have 1 mg tablets of prednisone? It you dropped from 15 to 12.5 and felt an increase of pain, you might try adding 1 mg to your daily dose or splitting the 2.5 tablet and going up half of the previous dose. Then if the pain goes away, you can taper from there. I kept a daily log of my level of pain when I got up in the morning along with the dose I was taking that day. If it was time to taper but my pain level was above a 2, I delayed the taper or I bumped it up a little trying to stay lower and not go back to the previous dosage of prednisone.

Not sure if you've seen this discusssion but you might find it helpful:
-- PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/

Magnesium before bed helps my thighs.

I will give it a try. Thanks!

Not sure if that was directed at me, but saying this isn't a race comes off a bit patronizing and isn't particularly helpful. I'm not trying to be unpleasant at all, but of COURSE it's not a race - however, balancing the negatives of pred with the incredible negatives of PMR is different for everyone and we all have to figure out what that balance is - hopefully with the specific experience-based advice from those that have been dealing with this longer than those of us who are just learning. As I will share my experiences for others to hopefully get something out of.

That said, per my rheumatologist I'd been tapering from 40 mg at the reduction rate of 5 mg per month. So a month at 40, a month at 35. At 30, with no change in pain levels, I decided to try dropping 5 mg after 2 weeks instead of 4. Which is why I asked the other person here that had tapered from 60 what their rate was.

Again, we all have to apply these data to our own situation. No one knows, from a post, my age, weight, pain level, experience or anything else; I have those data and need to try my best to contour my treatment and taper to those factors. My hope is to get help and learn from the experiences of others as I do.

I am sorry. I never meant to be patronizing. I figured incorrectly that this topic has come up many times. For a very good tapering schedule please go to healthunlocked.com.

No harm, no foul. Perhaps I'm overly sensitive. I really value and appreciate all the support and information here and it's a tough situation for all of us, I know. For those of us new, it's tough to get up to speed as we haven't been reading the boards for as long as some that have been fighting this fight for a long time.

Didn't mean to be harsh at all - hope I wasn't. And thank you for being an active part of the community and sharing. I can say that as someone just coming to grips with this disease, it means a LOT.