Weaning off of prednisone & pain management

ALSO, how slowly were you weaned off Prednisone (time wise, monthly, bi-weekly, reduction, etc.), and what were the level of mgs of Prednisone you were weaned by (from 5 mg to 4 to 3 to 2, etc. or 5 mg to 2.5 mgs, etc.)?

Hi there- So sorry for the pain…12 out of 10, yikes.

You may want to consider tapering your dose more slowly. The lower your dose gets, if you keep dropping down by the same amount, it’s still taking up a larger percentage of your total dose.

My dad was right about where you are when he had a huge flare. He has to go back up to the increased dose for a few more weeks to get back to baseline pain, then he dropped down to 6.25 mg (because we had 2.5 mg pills and he took 1.5 of those pills). Eventually, he got down to 5 mg, but he’s been at that dose since last December due to some health issues that may or may not be pushing up his ESR.

In reading about others’ experiences, it sounds like the lower the dose, the more challenging it can get to taper.

You’re reporting a lot of pain though, so I think it’s with considering slowing the taper after you can get the pain calmed down and/or talking to your doctor. I know it’s not ideal, but I just try to remind myself it’s about quality of life, not speed. Wishing you all the best.

Hi @joan7, weaning off of prednisone and managing pain is a common topic in the PMR support group. No surprise, right?

I think you'll appreciate the stories and tips shared in these related discussions:
- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
- When and How to Taper Prednisone: https://connect.mayoclinic.org/discussion/when-and-how-to-taper-prednisone/
- How did you cope with the side effects tapering off prednisone?: https://connect.mayoclinic.org/discussion/taper-side-effects/

The following link spells it out. However, there is considerable controversy about what the "best way" actually is for weaning off prednisone while still managing the pain.
https://emedicine.medscape.com/article/330815-treatment
"Joint guidelines from the European League Against Rheumatism (EULAR) and the American College of Rheumatology (ACR) conditionally recommend starting corticosteroid therapy with 12.5-25 mg/day of prednisone or the equivalent. [30] A systematic examination of the peer-reviewed literature, which included 30 studies, found that most patients seemed to achieve remission of PMR with a starting dose of prednisone at 15 mg/day. A slow tapering of the prednisone, less than 1 mg/month, was associated with fewer relapses. Once prednisone is tapered to 10 mg/day, a further slow taper by 1 mg every 2 months until treatment discontinuation was associated with optimal control of disease activity. [43]"

From my personal experience of 12 years taking prednisone for PMR, there are no magic ways that work the best for everyone. There were some approaches that worked best for me personally.

I have decided there is no "best way" and you have to do "what works best for you." That doesn't mean to "self-medicate" and go it alone. I tried that too and it didn't work.

You need to work with your doctor until you find a way that works for both you and your doctor. Easier said than done! I gave my rheumatologist most of the credit but WE eventually found a way. I have been off prednisone for 2 years with minimal pain. I have mostly recovered from prednisone side effects.

The link above also provides some alternatives to long term prednisone when the recommendations don't work. I think you still need to give prednisone a year or two before the alternatives are tried. This time frame is usually followed unless you experience considerable side effects from prednisone earlier than some people.

Sometimes PMR isn't "self-limiting" like it is supposed to be. However, the side effects from long term prednisone use are well documented. In fact, any dose of less than 7.5 mg is extremely problematic and may also be a prednisone side effect acquired from long term use. This probably explains why you need to go slower when you reach single digits of prednisone.

Thank you so much for your feedback. It is greatly appreciated! I will definitely be mentioning to my doctor how much pain I have had, and inquire/recommending about tapering slowly. You are absolutely right. This is not a race, it's about quality of life. It took me 3 1/2 years to get a diagnosis of PMR. I think I can wait another 1/2 year or more to taper slowly off the Prednisone, especially if the outcome will be so much better. Thanks again!

Thank you for the info! I am leaning towards slow weaning because of the severe pain I recently experienced. I will be talking to my doctor about this. I've been seeing a PA that is currently filling in for my original doctor that diagnosed me, so if I'm not comfortable with what she is recommending I will be sure to let her know, and try to come up with something that is comfortable for me as well as her.

That drop is too steep. Try not to go more than 10% at a time. At 10mg, I was okay dropping by .5mg every 10-11 days (changeover is on Sunday or Wednesday). However, that didn't work for me after I hit 5mg, Arm pain reappeared and was increasing - after ten days at 4.5 I was noticeably uncomfortable. When I started 4mg, the pain worsened. Although I have osteoporosis and would REALLY like to get off prednisone as soon as possible, after three days at 4mg. I decided to backtrack. Took one 5mg tablet, then restarted at 4.75. Pain stopped, although I wouldn't go so far as to say that my arms feel exactly as they did before PMR... but then, I'm 80. Caveat is that I'm at 4mg now, so I can't report on how the whole distance will go. With each drop of .25mg, there has been no pain other than barely noticeable discomfort getting dressed in the morning. I don't think about PMR very often.

Also, I was told to avoid Advil and aspirin (NSAIDs). Tylenol is okay.

For me, I found dropping by 0.25mg prednisone every 6 days worked after I had several flares when I tried to go below 9mg. To do this I became a good pill splitter using a pill cutter found at the pharmacy and 5mg and 1mg pills. Even at 0.25mg per day I found the prednisone still had a considerable effect on masking pain and discomfort. My prednisone ended on Dec 31 2023. Since then I have had ups and downs with pain mainly in the nerve area. It was like my nerve endings had to wake up and work again. Pain here...pain there... but only lasted for a few days in each location, Weather seemed to play a significant role in the pain level and aches. Walking and exercise thru the day really helped to lessen the morning aches and day stiffness. Feet and knee neuropathy is still my main issue along with minor joint/muscle aches.
I have learned..."Keep moving!!!!!! They don't keep race horses in the barn. Its move or the glue factory!!"
Mike

A couple of thoughts:
1) Compared to other folks experience here (and mine), jumping from 7.5 to 5 seems like a bit much once you were at/near/below the physiological dose (which can be either 10 or 7.5 depending on the source). At this point, it would seem to be desirable to determine whether the pain is being caused by PMR, or another condition. That needs to be diagnosed by testing...an ESR for starters.
2) Drug interaction checker suggests that it can be problematic and even dangerous to take NSAID's such as Advil while on prednisone, and suggests that that should be done only with MD supervision. There can be increased risk of intestinal perforation by taking both drugs simultaneously, as they reinforce the toxicity of each other. I am on prednisone 8, and my doc only approved concurrent Tylenol, which evidently does not have the side effects of NSAID's while on prednisone. I have been tapering only 1 mg per month since 10 mg and have not had any pain issues at the level you are experiencing.
3) Because of 1 and 2 above, and because everyone does not have the same reactions to the common drug therapies available, please get your doc involved ASAP.

Someone posted this link about a week ago. I am recommending it to everyone here as the best single educational source of the issues related to prednisone tapering that I have seen recently. Best of luck to everyone on this journey.
https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2024/02/Brit-J-Clinical-Pharma-2020-Baker-Is-there-a-safe-and-effective-way-to-wean-patients-off-long%E2%80%90term-glucocorticoids.pdf