How does your pain come back when decreasing dosage?

Take Extra Strength Tylenol once a day in the early AM hours. That helped me be able to lower my dose. Then after about a week or 2, I stopped taking the Tylenol until the next decrease in methylpred. Also, I am on Methylprednisolone instead of the regular pred. I have never had a flare up. I started at 20mg in early December 2024. I am now at 2mg without any real issues along the way.

I was diagnosed with PMR early October 2025 after four months of unexplainable debilitating pain. My C-reactive protein test was 28 (WNL=1-10). My PCP started me on 20 mg Pred. I weigh 112 pounds and he felt like that would be good "for a skinny little girl"! I wanted to take the least amount possible, so I decreased it to 10 mg after two days. My pain returned within 2 days of decreasing the originally prescribed dose. I confessed to my PCP and he said take 12.5 mg. That was just perfect for me. I have; however, decreased the dose back to 10 mg after 14 days on 12.5 mg. So far, no issues at 10 mg. My PCP explained the tapering process as he sees it: if you take more than 10 mg. daily, taper requires 1 mg per month, and if your dose is 10mg. or less, taper can occur at 2mg per month (if tolerated). I am sure this is on a case by case basis. As 'tweetypie' has already said, we are all different and, I'll add, react differently to any disease process and medication. I am able to return to my prior daily exercise routines of resistance training 5-6 days per week and yoga 4 days per week. I have had to use yoga blocks since my symptom onset, but am using them less recently. Thank you all for your messages and support for one another. I have learned alot from your experiences and hope my experiences help someone, too!

I have been dealing with PMR for 10 years. Off and on prednisone. The secret is low and slow on tapering.
PMRGCAauk website is wonderful in giving advice from rheumalologists and people who have tried hundreds of tapering schedules. It is in the uk. (Polymyalgia Rheumatica amd Giant Cell Arteritis. ). You will find them helpful.

@predniso141

Not true... there probably aren't any rheumatologists that monitor that site. The patients in the UK are usually seen by a primary care doctor and not a rheumatologist. The charity that sponsors that site promotes research and raises awareness for the cause of PMR and GCA.

There are mostly patients on that site. There are just a few patients who claim to be experts but they aren't medical professionals and certainly not a rheumatologist. I think their intentions are good but they shouldn't give medical advice on the internet. The site does have a disclaimer that says information from that site does not substitute for medical advice from your doctor,

There is no tapering method that is research based that works the best for everyone. The correct way to taper off prednisone is an individualized approach based on many individualized factors.

There is universal agreement medically that the taper off prednisone should be slow and it shouldn't be stopped abruptly after prolonged use. Doctors are aware of the difficulties with tapering off Prednisone and are working on this problem.
https://www.healio.com/news/rheumatology/20250220/tsunami-of-effortbrings-biologics-to-the-forefront-in-giant-cell-arteritis-pmr.
-------------------------
Bhaskar Dasgupta, MD is a well respected rheumatolgist in the UK. He is cited on the above link along with rheumatologists from the USA. I think doctors all over the world would agree that long term treatment of PMR/GCA with Prednisone is NOT an ideal solution to the problem.

I am tapering now and wondering if the pain comes back is it usually in the same place?? Just trying to figure this all out!!

My rheumatologist told me to taper at 1 mg per month. I’m at 9from 10.

@mezack25

Probably not all the same place as PMR. Many things happen when we are on Prednisone for a long time which can contribute to more pain. When other things crop up they need to be investigated properly and not assumed to be "PMR pain."

Prednisone relieves most all types of "inflammatory pain" as well as relieving PMR pain. The common misconception is when Prednisone relieves the pain--- then the pain must have been caused by PMR. There is "positive reinforcement" to taking more Prednisone for PMR but more prednisone isn't always the most appropriate thing when it isn't PMR given all the side effects.

You are right ... it is difficult to figure it all out. Doctors are better equipped to make sense of it all because they can order labs, x-rays and many other tests that provide more information.

@vjm0223 This was my schedule, too, when I got to 10 mg. Unfortunately, I had a flare at 8 mg. and then started monthly Actemra infusions. They have allowed me to taper without any flares. Next week, I'll be at '0' mg.

@ropnrose

How long did it take to get to zero after Actemra infusions were started?

It took me 10 months. For about the first 6-7 months, I had some leg pain. I don't think it was 'PMR pain'. The pain stopped after 7 months. I have been able to eliminate the metformin that I was taking, since the Prednisone turned me into a diabetic for a year.