Anyone tapered down as directed, but increased back up on their own?

Welcome @joycj, We husbands definitely need an encourager. Good for you for helping your husband with his tapering down on the prednisone. My first time around with PMR I spent the last six months of 3 and half years with PMR going back and forth between 1 mg and 1/2 mg until I was finally able to taper off. If it were me and I was at 2 mg and the pain came back, I would wait a day to see if the pain was still the same then bump it up half of the amount that I had previously went down. Mainly to see if I could the tapering going without going all the way back to the previous dose. We are all different so what works for one may or may not work for others but it might be worth a try.

If you haven't already seen the discussion below, you might want to read what others have shared helped them.
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

Does your husband keep a daily log with his level of pain in the morning and the dose amount for that day?

Thank you, good advise, we will start charting. Also in the evening he's been taking an Advil to carry him through the night. I was worried of changing doses on our own, because some google articles say not to mess with changing dosages as it may make condition worse... I may just have to call the dr. I know there are other folks worse conditions, but "When we are weak, He is strong" I am thankful for all you folks sharing and for Mayo connect.

I agree it makes sense to check in with the doctor, but it’s extremely common, especially when getting to the lower doses to need to either slow the taper (i.e. take the dose for longer or reduce by a smaller amount) or have to go back up again to get stable before going back down again. Unfortunately, tapering prednisone with PMR is rarely linear.

With my dad, his rheumatologist said to us, “We have to listen to what his body wants to do, but the other way around,” meaning we could come up with one plan or wish to go faster or “follow the instructions” but if it doesn’t make sense for his body, it’s moot. Thankfully, she’s very supportive of us making minor adjustments on our own, and of course we keep her posted because as we all know, it’s not always practical to be able to reach a doctor immediately to get an answer. There’s been situations where my dad got pneumonia or a respiratory infection when it simply didn’t make sense to lower his dose while his body was already under stress, and we felt confident making that decision on our own without his doctor rubber-stamping it, but I always sent her a message to let her know and if it doesn’t seem urgent then I send her a message and we wait to hear from her.

But I know that can seem intimidating and there are some who prefer to follow the provider’s instructions as written. It’s not that I’m endorsing not listening to your doctor; it’s just that my family has been in many a situation (including trying to get the PMR diagnosis) when we had to advocate for ourselves and trust our intuition…within reason.

It could be good to talk to your doctor about what they suggest to do in those situations, such as if your husband were to get sick or like with the situation you’re having now, what’s the best way to handle it and how to decide whether or not to pause the taper or go back up again? It made us feel more comfortable when my dad’s doctor gave us some tips on what to consider.

Also just a head’s up, it’s usually not recommended to take an nsaid (advil) with prednisone because of the bleeding risk and potential for stomach issues, but I’m not sure how flexible that is.

I hope your husband feels better soon.

Definitely call the doctor. Sitting with PMR pain for too long, especially if it's getting worse can make the inflammation settle into a flare, and that probably means a bigger increase will be needed.

Reducing too fast then having to raise it quite high to resolve a flare results in a bigger cumulative dose than going a bit slower does. Your husband was on a very fast reduction, though maybe there was some medical reason for that. I'm surprised he made it down to 2mg before pain started.

I would guess everyone increases their dose at some stage in their taper. The issue is whether or not you inform your doctor before increasing your dose or do you "self medicate." I did both but my doctor wanted me to work together because she wanted to help me get the problem resolved.

In the absence of advice from my doctor I would increase my dose and tell my doctor later. My rheumatologist would understand why I would want to increase my dose. Most of the time she advised a dose increase as well but usually after checking my inflammation markers or after gathering additional information.

Sometimes when I described the pain to my rheumatologist and after checking my inflammation markers, she didn't think it was PMR pain. In that case, she would suggest some other intervention.

I think the best thing to do is to delay any dose changes and tell your doctor about the symptoms you have. My doctor wanted me to keep her in the loop and wanted to know what I was doing before deviating from the plan. The overall plan to get me off prednisone as soon as possible stayed the same, Fortunately, my rheumatologist knew that adjustments were needed when things didn't go according to the plan.

That's exactly the protocol my doctor had me on. I tried to stay on 10mg for 10 days before I had to go back to 12.5 - pain was not ignorable.

My doctor wants me to try again in 2 weeks. If I experience pain, go back up. There's no perfect formula. I want to be off Prednisone, but I sure am thankful when I'm pain free.

Yes I tapered and had to go back up. You can do well and have a flare and need to go back up slightly and proceed to lower from there again. Don’t do it on own, check with your doctor - he may want to do bloodwork to check your level so it will help determine what to increase you up to. Good luck to you, stay positive, best attitude to take with this.

I was told to avoid Advil, ibuprofen and aspirin (NSAIDs) while on Prednisone because it increases risk of stomach ulceration and bleeding. Tylenol is okay.

Regarding your primary question: After 10mg, I was reducing by .5mg every 10 days. (Rheumatolist instructions were to attempt to reduce by 1-2mg per month.) This kept the rate of decrease at less than 10%. After 5mg, I continued to decrease by .5mg but started to feel discomfort in my left arm. After a few days at 4mg, the pain increased to the point that I decided to back up. Took one 5mg prednisone, then the next day began tapering at a rate of .25mg every 10 days starting with 4.75mg - again, reduction kept at less than 10%. Pain gone. When there is no discomfort from a taper, I'll shave off a few days now and then, a week rather than 10 days. I've become accomplished with the pill cutter.

Good advice from all of you. I will be calling Dr. (Maybe the dr. was hoping the faster taper would be a success.) Thank you to all, ... I am so glad I found this "PMR chat life-line" Blessings ! Joy and Andrew

I'm also following advice from this forum and alternating dose up and down each day by 0.25mg or 0.5mg and gradually pushing it lower but no more than 1mg per month. Keeping a chart of dosages so i know where i'm up to. Its working well for me, keeping pain levels managable. Im 8 months in, on 7.5mg, have had several bad flares, CPR is still high at 20 and Rheumatologist is ok with this approach as long as i tell her if i need to go up more than 1mg to control pain.