Tapering off of Prednisone

My experience is close to yours, except I have four areas that stubbornly hang on. Top and sides of thighs, and neck and shoulders. It can all be taken care of with one or two Tylanol first thing in the morning. I hang on to the comfort of knowing that I have made great strides in the past year, cutting the pain by 80% and will probably be able to bring down my 3mg prednisone to 2mg soon. True, there are good days and bad days. I work on the good days and rest on the bad.
Hang on and keep believing that you can survive. My best for your recovery.

True. The first thing my Rheumatologist told me was, there is no advantage in 'toughing out the pain and weakness'. if you hurt see your doctor and have them up your prednisone.

Just my opinion but I feel that pain should be gone or nearly gone before starting to taper your prednisone dose. When you were first diagnosed you had a mountain of inflammation built up and typically it takes 15 to 20 mg to bring that inflammation under control, resulting in minimal or no pain. When I initially was put on pred I started at 15 mg and it was a miracle with the pain vanishing. However, my rheumy wanted me on an aggressive reduction schedule and within a month or 2 I had a massive flare up from taking too little pred. That time I had to move all the way up to 30 mg before the inflammation was knocked down and my pain was brought under control. Reduction should be a very slow path. If you suffer significant pain it means you're low on the prednisone dose. The one rule I learned early on is that the dose reduction should never be more than 10%. A bigger reduction invites a flare and after each flare you end up having to go to a much higher dose to get the inflammation under control again. Some rheumies (in my opinion) are hellbent to get a PMR sufferer off of pred too quickly. Yes, some of the side effect do suck but without pred I would have been an invalid. Do I miss what I used to be? You bet, but I've gained great appreciation that I can control this beast inside me and live a normal life - at a reduced level. PMR forum discussions are a very important source of information and support.

Good luck w it. Very tough to be living with such significant pain. Hope the rheumatologist can help you find a prednisone dose or combination of drugs that do relieve the pain & are effective in further reducing inflammation. It’s a horrible affliction. 😓

Thank you, thank you, thank you. This is so helpful.

Just from a logical viewpoint, tapering while the pain is still bad does not make sense to me; the pain will only increase. If it is already strong, making it worse makes no sense.

To be honest, before prednisone, my pain was so bad that life would not have been worth living if it could not be treated. Prednisone made it bearable, but so far my life is seriously impaired. I was diagnosed on Feb 3, 2023, so its all new to me.

My rheumatologist has made statements about tapering that really bothered me, but I've learned now that I have to be VERY direct to make sure my concerns are heeded.

This forum, and comments like yours are extremely helpful.

I can totally understand where you are coming from. The first couple months are a whirlwind, trying to grasp what's happened and how to best deal with it. What dose is needed, what time of day/night to take it, food intake, possible sleep issues, sorting out types of pain, etc, is enough to make your head spin right off your shoulders at first!
I don't know about you, but there is a comfort in knowing the name of the beast that has attacked your body. It gives you a target but you absolutely must be your own advocate and not blindly accept everything you're told. Become informed through this site and other forums. I've had 4 rheumatologists over my 6+ years of PMR. One moved, one retired, I fired one and I'm currently on the 4th one. None of them approached treating my PMR in the same way. Don't get me wrong, many GP's and rheumys are excellent but there's also a large number that are operating on outdated info about PMR or have their own ideas about treating it because they're more used to treating rheumatoid arthritis and such things. I'm on the higher end of the treatment timeframe at 6+ years so far but I made my own decision to slow down my reduction radically after 3 massive flares in the first 2 years put me back to where I had started. I'm currently at 2.5 mg of pred and my current rheumy said as far as he was concerned I could take that for the rest of my life and have no issues with the pred because of the low dose. I agree. A comment from another forum that I heard years ago has really stuck with me. "It's not a relentless reduction of the prednisone dose to get down to zero. It's a gradual reduction, finding the lowest EFFECTIVE dose. It isn't a race."

You might find this tapering plan helpful...

--- Dead slow and nearly stop reduction plan (Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

Yes, the DSNS (dead slow/nearly stop) is the reduction I've used since the last big flare. Have only had a couple hiccups since then and both times I had to move the dose up a little so things were under control again. I would hold at that level for 3-4 weeks and then continue the very gradual reduction. I'm a big believer in that plan!

I found this method for slowly tapering off prednisone on a website in the UK.
I’m now tapering from 5MG/day very slowly. The following was taken directly

This is my take on a slow taper -useful for lower doses or if you are really struggling to reduce even at higher doses. I usually found once I completed week 5, I was able to go straight into the next taper. But you can always stay an extra week or so, it's entirely up to you.

As I’m always saying it is only a plan, if you need to alter it (say to repeat a week) then do so.

It’s easy enough to draw out on a piece of paper, but I do have all versions as a blank copy in Word an/or PDF - or an excel spreadsheet which updates the doses ( which I used and printed off). If anyone would like a copy of any or all of them please send me a PRIVATE MESSAGE - not the open forum, and include EMAIL ADDRESS - cannot forward via HU.

TAPER (5 weeks);

Week 1 -
Sun, Thurs new dose –Mon, Tues, Wed, Fri, Sat old dose

Week 2 -
Sun, Tues, Thurs new dose -Mon, Wed, Fri, Sat old dose

Week 3 -
Sun, Tues, Wed, Thurs new dose -Mon, Fri, Sat old dose

Week 4-
Sun, Tues, Wed, Thurs, Sat new dose -Mon, Fri old dose

Week 5 -
Every day new dose

SLIGHTLY LONGER TAPER (7 weeks)

Week 1 -
Sun - new dose – Mon to Sat old dose

Week 2 -
Sun, Thurs new dose -Mon, Tues, Wed, Fri, Sat old dose

Week 3-
Sun, Tues, Thurs new dose -Mon, Wed, Fri, Sat old dose

Week 4 -
Sun, Tues, Wed, Thurs new dose -Mon, Fri, Sat old dose

Week 5 -
Sun, Tues, Wed, Thurs, Fri new dose - Mon, Sat old dose

Week 6 -
Sun to Fri inclusive new dose

- Sat old dose

Week 7 -
Every day new dose

ULTRA SLOW TAPER (14 weeks) - if you are really struggling, or you have tablets that cannot be cut.

Same doses as the 7 week taper but repeating each week.

REMINDER
Whatever tapering method you use, a slower one just means you can get from higher dose to lower dose more easily…but it’s not a silver bullet…..if the lower dose is too low, it’s too low. Nothing changes that fact.

Everything I have read (on two other PMR web sites) and been told (by my rheumatologist) is that it is important not to taper too quickly. Experts on the web sites say your pain should be minimal or non-existent before you reduce your dose and the reduction should not be more than 1-2 mg. at a time. Check out the PMRGCAuk section of healthunlocked.com (an excellent UK web site) and the PMR community on stuffthatworks.health (especially posts by Ed582, a physician who also has PMR). I hope this is helpful.