I ave only been taking Medrol for about three months, and because of the idiocy of my Rheumy, who had me taper to quickly, I have already had two flares.
I was ok on 18 mg but flared at 16mg. Took myself back to 20mg at which I am ok. Not totally pain free, but ok. I have been taking the higher dose for 6 days. I would like to know when I should try to reduce to 18mg again. Rheumatologist says this won’t work and wants to put me on Mtx, which I really don’t want to do.
W
I’d give it a week and then go down 1 mg at a time using one of the tapering programmes on this site like dsns.
You sound like I did in 2017. I was feeling good at 20mg after 3 months of treatment. He decided to drop me all in one fell swoop to 15, and I went into a flare that lasted for months. I fired him and went back to 20mg until the flare subsided 4 months later.
My new rheumy wanted me on MTX, too. I refused, and demanded control of my taper. It ws a very long argument, sustained over a few visits, and occasionally got loud. I won.
I dropped 1mg or .5mg at a time over the course of the following 12 months, sometimes as quickly as every week, sometimes sitting pat for 4 weeks or more. I occasionally took a step back for a day or a week or longer when I felt I should. I'm down to 6 mg now, 13 months after I started my taper, and had no flares. My markers are at, or just slightly above, normal.
I'm no medic, and am only offering my own experience. As we all know on this site, PMR and pred is not a one-size-fits-all scenario.
Take your calcium and Vitamin D. Take it easy with exercise - go for keeping range of motion over building strength. Slow stretches, walking, and when you're better, pool based work for strength and endurance.
Watch your diet. Cut nutritionally empty carbs and sugar. Some people go for eliminating carbs, but that leaves me with no energy, so I eat my potatoes and skip the fries. I also eat whole grain pasta and bread (some folks are going to be unhappy about this). I sub fruit for cookies and cake, or make cookies and cake using fruit if I'm really dying for something that resembles normal. I had gained about 7 pounds, but I've lost them.
Going going and almost gone are the moon face, the buffalo hump, the pred belly. My thighs never jiggled before, and they're going to need some work when this is over, but otherwise, I look and feel pretty good overall.
Your decisions are your own to make, and this site has a wealth of information and experience to offer in making those decisions.
Welcome fellow traveler, and wishing you well on the journey.
Darling wonderful post full of optimism and sound advice. You’ve helped me enormously xxxx
Excellent advice! Thank you, Good Grief.
Everyone is different. The goal of taper is to find the lowest dose that manages your symptoms. If big steps are not working for you, then try reducing by 1mg and wait at least 1 week at each level or until you feel as good as you did after initial dose of steroids at the beginning of the journey. That is your reference. Most are 70-80% pain free, few have no pain just stiffness.
You have to negotiate with rheumi that symptoms, not some arbitrary time-table should be a guiding factor in reduction. After 3 years working with my rheumi, he pretty much ask me how much pred I need until next appointment. We all want to get well and stop steroids, but it has to be done in reasonable manner, not just forcing reduction to zero.
Hi nickm
You suggest 1mg/week, I am currently at 12 from 30 at end of last October when I was diagnosed by my GP. If I do a 1mg/week reduction I should be at 0 in 3 months which seems a bit fast.
My Rheumy has just put me on a 0.5mg/Wk reduction for 12 weeks before my next visit but if I keep going at this rate it will take me 6 months.
The lower the slower your taper should be. One half mg may be fine for a couple of steps, but a time will rapidly arrive when you would be wise to taper by 1 mg a MONTH and eventually .5 mg a month until you get to the lowest dose which still controls the symptoms as well as at the beginning. Pred can't be discontinued until PMR is in remission (not just pred-induced remission) and at the lower levels adrenal function also has to be taken into account.
Reducing the dose every week doesn't allow enough time to know the new dose is still enough - with the result that if the symptoms return you have no idea at what dose you crossed the border from OK to not OK.
This isn't a race nor reduction to zero - you will get to a dose that is too little to manage the symptoms and then you go back to the previous dose for a while.
My Rheumy has asked me to reduce by 2mg/month for 3 months which equates to about 0.5mg/week and will take me from 13 down to about 7 before my next visit at the end of March if I don’t have any issues. I presume she will then slow the taper through the more critical stages. My GP said to stick with it and he will monitor my progress.
"I presume she will then slow the taper through the more critical stages"
There are no defined critical stages in PMR and they can certainly happen long before 7mg - some people need above 10mg in the earlier stages, others don't. And there is no way you can forecast which you will be. What we are trying to say is that when you reduce quickly, especially at more than 1mg per month, it is predictive of flares. And aiming to reduce from 13 to 7 in 2 months is asking for trouble - now reducing from 20 to 13 in 2 months might be more realistic but still potentially iffy. Same drop, different range.
Some great advice already offered on here.
I had a similar experience with my former rheumy. My GP diagnosed me and put me on 20mg where I stayed for 3 weeks. Went to see rheumy who told me to taper to 15 for a month, then down to 12.5 and 10 (one month at each level). Going to 15 caused few problems, a bit more sore, however when I dropped to 12.5, flare. Back up to 15 for 5 weeks, then embarked on slower taper of my choosing. Decided to drop by 1.25mg increments as I only had 5mg pills (cut them in four). Went down 15, 13.75, 12.5, and 10mg. Now tapering to 9.5 (will go down .5 increments from here on in). Former rheumy also pushed Methotrexate at all three appointments, even before I flared. I refused both the Methotrexate, and to see the rheumy again. Now under the supervision of my (great) GP who diagnosed me with PMR in the first place.
As folks have already said, symptoms rule. Listen to your body. Good for you for refusing Methotrexate, obviously the reason you are having trouble tapering which is resulting in flares, is due to the fast taper your rheumatologist has put you on. Very frustrating to have medical professionals give us direction and when we don't respond to a "textbook taper" they want to immediately prescribe something else. Advocate for yourself and following your own (slower) tapering schedule. Good luck moving forward.
Good advice from everyone! Sometimes I don’t know which is more painful, the PMR or my rheumy’s absolute arrogance.
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