I think I have PMR and I’m terrified

@martyn I agree with @rosette that you shouldn't be too aggressive in tapering off of prednisone. Your goal should be to find the lowest effective dose that controls your PMR, and then stay there for an extended period of time. You can't just keep trying to reduce down to zero. PMR burns itself out in most people, but it usually takes at least a year or two. I have been taking Actemra throughout most of my treatment, and that allowed me to taper off prednisone fairly rapidly. To get from 20 mg prednisone down to 10, I stepped down 2.5 mg every 2 weeks. My rheumatologist had me stay at 10 mg 4 weeks, and then I stepped down 1 mg every 2 weeks to get down to 5.

You need to step down gradually and find the dose that does not control your PMR, and then go back to the last dose that was effective. If you go from 20 to 12.5 in one step and your lowest effect dose is 13, you won't know what the correct dose is to go back to. You would have to start back around 20 and then start stepping down again.

It's better to be cautious and patient, and not have to bounce around with your prednisone dose. That can cause flares.

@martyn
Sorry to bust your bubble……DON’T taper more than 25%. Then plan to be pain free for minimum 2 weeks and try again. You go too big and end up going back up, into a roller coaster effect.
That is my experience and what I have read here many times.
yes too simplistic.

@tweetypie13 no apologies needed!!! I’m getting ahead of myself

@martyn We all do…..best news is you muse, ponder, think, ask and then make an informed decision . 🙇🏼‍♀️

@martyn

You're doing the right thing by seeking out information.

Just be careful about listening to what your body is telling you to do. I learned that my body wasn't very trustworthy for telling me what dose of Prednisone to take or why I should take it. I know that I took prednisone for reasons other than PMR when better treatments were available. I'm also sure I was taking more or not enough prednisone most of the time. Being in pain is never the best time to make informed choices.

Prednisone can be a devious fellow. One of the side effects is a false sense of well-being so it tricks your brain into thinking everything is fine when things aren't so good. There is a name for it. It is called prednisone induced euphoria.
https://www.mayoclinicproceedings.org/article/S0025-6196(11)61160-9/fulltext
----------------------------------------
Beware of anyone who says prednisone side effects are easy to manage. I have worked in a hospital setting where corticosteroids are widely used for many reasons. Prednisone side effects are not easy to manage.

I don't mean this to scare you because you can take prednisone responsibly. Most of the time nothing too adverse will happen to you. There are things that both doctors and patients claim to know but in reality nobody knows. I appreciated it when a doctor told me what they didn't know. I'm a bit of a control freak with an independent streak but at least I know what I don't know. I would tell my doctor they knew more than me which they seemed to appreciate too.

I think most doctors do what they think is best for their patients. I somewhat accused my rheumatologist once for prescribing too much prednisone to me which made her laugh because she had never heard that before!

@dadcue thanks for the message and great advice ! Have a good weekend

As others have said, prednisone is a necessary evil in the beginning of a PMR journey and tapering too quickly is not a good idea. It might actually have the opposite effect. 20mg as a starting point is not too high. As Rosette said, your body weight has something to do with the effective dose. I was started at 15mg but had to increase to 25mg for any relief, but I'm 6'3" and 245#. Dropping from 20mg to 12.5mg needs to be done incrementally. The 5mg decreases every 3 weeks that my doctor suggested were too much for me so I did 2.5mg every 10 days. Your body will guide you.

@martyn the symptoms seem all over the place. I refused pred (side effects) for 2.5 months. Started what I thought was very high 30MG, for 1 week, then taper each week by 5MG. My pain was gone completely 1-2 hours after 1st dose, incredible. Tapered to 10MG, then more slowly to 2.5MG Since my total time on prednisone so far is March 20 to today the tapering has been easy, but PMR pain is definitely there. My last few weeks have been 2.5MG 5 days, 4, then 3 days a week and so on. My doc said 'trust the sediment test, down from 125 to 22, just about normal. I was scared but it is working. There is hope but it takes time.

@martyn
I see that @rosette has given you a very wise answer to tapering. I would add that you need to find your minimum effective dose that manages most of the daily symptoms. I was prescribed 12.5 mg at the start which worked nicely as did 10 mg. From 10, it's important to go much slower only dropping 1 mg at a time and staying at the dose long enough to keep things under control or go to an alternating 10, 9, 10, 9, etc strategy. Hopefully, your doc will be able to help plan with you. As you can see from this forum, everyone's taper program is different and some manage things quicker than others.

@kjoed53 thanks for the reply. Interesting as you say that every tapering experience is very different. I’ve had no symptoms for 4 days on 20mg which was used as the test to see if I actually have PMR. So I’m hoping that I can maybe go to 15 as a starting point and see how I go with that. It’s so odd that there is so much vagueness from the medical profession about this condition. No real definitive cause or even whether it’s actually curable! Weirdly the rheumatologist didn’t ask my weight…