How do I handle the ups and downs of PMR? So many questions.

Welcome @andirae, It's not uncommon to have a lot of questions being fairly new to PMR and trying to taper off of prednisone. You are definitely not alone with the questions and the best thing you can do is learn as much as you can about the condition and how to manage the symptoms. I've had PMR twice and both times started at 20 mg prednisone. My first time took 3 and half years to taper off and I was in remission for about 6 years. The second time with PMR took me 1 and half years to taper off in the fall of 2018. So far it hasn't reared it's ugly head again but you never know. I did make some lifestyle changes which I think have helped but it remains to be seen. While you wait for others to respond, it might be helpful to read through a few other discussions on managing PMR symptoms and tapering off. Here's a search results link to the discussions and comments - https://connect.mayoclinic.org/search/?search=pmr+managing+symptoms.

It might help to keep a daily log with your symptoms when you get up in the morning plus your dosage of prednisone for the day. Do you keep a daily log?

Thank you for replying.
I don’t yet keep a log but did see somewhere in others discussions about that. Plan to start tomorrow.
Hoping for guidance and encouragement. At least I don’t feel as alone.

This article might be helpful for some suggestions if you haven't already seen it.
-- Polymyalgia rheumatica diet: Foods to eat and avoid:
https://www.medicalnewstoday.com/articles/321683

Welcome to the forum, you are among friends. Remember that patience is a virtue with PMR, average time to remission is 1-3 years. Don't be discouraged if in the course of tapering off prednisone symptoms get worse and you have to go back up a step or two in your taper.

It's an insidious ride. Personally, I experience what you spoke of, that the body adjusts eventually to the taper. Mine had to be elongated to a month with each taper and only by .5 mg. This really helped.
This group has helped me to understand how the pred works and also the unexpected quirks of the PMR breakthroughs. I hope you will benefit from everyone here. 😊

There’s several great informative chat groups on Facebook that is helpful under PMR

Logging your Pred dose, symptoms, even significant dietary changes is very helpful. I also keep details on supplements I'm taking and doses of my other DMARD, e.g Planquinil. There are time lags in drugs taking effect and lots of side effects to be aware of. It helps you to identify patterns and make necessary adjustments. If I had to rely on my Rheumatologist to manage all this, I would still be on an excessive dose of Prednisone and feeling hideous due to Methotrexate toxicity. It has been my own monitoring with the help and advice of this group that got my CRP from over 100 to less than 17 in 11 months. Pred is now at 4.5mg. I have tried to learn all i could about the disease and now to manage it.

In my experience, the main lifestyle change needed was diet. Keep a log of what you eat and adjust accordingly. Suggest no red meat (although someone here suggested grain-fed might be ok); no white flour, very limited sugar, very limited alcohol- like 1” of wine! Works for me and I’ve tapered from 20 mg to 8 in 4 months.
I take dose at 4 am so when I get up, I’m not in pain for the day. If any pain, Tylenol works well. Don’t take an NSAID-(anti inflammatory like Advil) . Doesn’t mix with prednisone. This regime has been trial and error for me. Good luck.

Hello,
You seem to have made progress. Kudos to you. May I ask what happened to you when you took Methotrexate and for how long were you on it? I’m trying to research pro’s and con’s of Methotrexate. It’s been around for decades and beneficial in many areas of health management.
Warm Regards!

I have only used prednisone. No methotrexate at this point yet. It’s been talked about though. Need to know more about it before I ever do.