I have a question regarding tapering. I was diagnosed with PMR quickly by my GP in June 2022. I am 69 years old and have been taking it very easy.
The initial prescription was 15mg of prednisone. That was upped to 20mg for a short period of time, back to 15 mg, and shoulder pain has subsided well. When I reach 10 mg in September, if the trend continues well… our plan is 4 weeks at 10mg, 4 weeks at 9 mg…etc - provided the pain is managed. My question : what about 1 week at 10mg, 1 week at 9 3/4, 1 week at 9 1/2, 1 week at 9 1/4… so the change is gradual ? Or is it better to simply go four weeks at 10mg, then drop to 9mg overnight after 28 days?
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Under 10mg there is no way I could manage 1mg reduction a month I could only do 0.5mg, but you may be better than I am! There are various reduction methods. If you look on the right hand side of this page and look at tapering steroids. There are also some tapering plans here healthunlocked.com/pmrgcauk...
Thanks for your input. I appreciate the sense of caution.
I noticed on Plan #4 of Tapering Plans from the PMRGCAuk Website (Mrs. Nails’ links) that 10mg for 4 weeks; 9mg for 4 weeks…etc is the prescribed pace. So I’ll try it until it does not work. That pace also appeared to be the norm on the website UpToDate - a physicians reference site in Canada. My sense is that it will be trial & error, but a plan is useful.
Morning LH, for many here that would a very quick rate of reduction and to get to 10mg by September is fairly quick, but if it is working for you and you are out of pain with a good quality of life that is fine. General thought is that, certainly from 10mg downwards don't reduce by more than 10% at a time and then only if your body is happy with it. I work on a 0.5mg reduction on a five week taper, but I'll extend that if and when needed. In spite of what some members of the medical profession like to think very few patients manage to be Pred free and have the disease in remission in/within two years.
I was one of those advised by gp for quick reduction and got 'stuck' at 10mg for a long time. Looking back, I can now understand the inflammation had built up over a long period of time and I hadn't given it a chance. I had bought into the 'get off steroids quick' mantra and struggled a long time. Since I had started the much slower tapering regime, I have been more successful in managing the pmr and the tapering.
We are all different and some manage better than others. Many of us on here are those that have struggled more, so a wealth of experience to draw on!
That is interesting to view the inflammation as built up over a long period of time. That rings true. I am getting the feedback that it is good to go slow with decreasing the prednisone dose. Thanks.
The best laid plans...from my own experience (and from reading others' journeys shared here) it seems once you lay out a plan for reduction, your PMR will have other ideas. I thought I would be on pred for 2 years (which my rheumy said was standard) and ended up taking it for 5. Every time I went down in dose, my symptoms came rushing back. GRRRR! It was a long journey and I held at 1-2 mg for a long time until I could fully come off. Listen to your body - that's the best advice I can offer.
I'd ask for some names of his "standard" patients!! In over 13 years on the forums, the number of people I know who got off pred permanently in 2 years can probably be counted on my fingers - or might need a couple of toes!
I doubt that my doctor has a standard patient experience inventory. I think she is guiding me with a treatment plan from a website rather than from multiple case experience.
But to her credit, she saw me in person the day after I phoned, examined my upper body strength and mobility, and ordered a blood test. The same week she gave a PMR diagnosis and prednisone prescription. She also spoke to a specialist by phone, while I was on the line, to consider GCA vigilance and confirm the initial treatment plan. We have spoken every 2-3 weeks since to follow up and monitor and exchange ideas.
I think I have been fortunate. On this forum I detect a fair amount of cynicism about hit and miss experiences with doctors and specialists. Our health care system in Ontario is in crisis, from Covid and financial overload and political distress. So for now I won’t be seeking a second opinion.
From the forum responses I notice that the question about splitting up a monthly 1 mg dose into 4 parts is disregarded in favour of comments on tapering slowly. So overall I gather that I should learn to live with PMR and prednisone rather than get over it. Thanks.
I appreciate the advice to ‘listen to your body.’ I am finding that each time I reduce the prednisone that my sleep improves ( and my shoulder soreness is stable at less than 1 out of 10. My body and my mind tell me that sleep is necessary to recover and strengthen… Fortunately I have found over the past 2 weeks that 0.5 mg of THC and CBN in edible form from the cannabis shop combined with less prednisone is working for me. Thanks for your comment and the bias toward slow tapering.
Are you being told to drop straight from 15 to 10mg? That is pushing it - they seem to think that it is easy to drop to 10mg but it rarely is, especially if you try to go 5mg at a time.
Everyone is different - but one common feature is that if the doctors try to make you drop quickly and that results in a flare of symptoms, the onward journey may be much more difficult. We don't know why but we see it all the time. And the more you flare - the harder it gets.
Hello. I am being told by my doctor to decrease the dosage by 2.5 mg every 2 weeks until 10 mg and then reduce by 1mg monthly. (I am also being told to journal my results and discuss them with my doctor every 2-4 weeks. She questions me pretty thoroughly, especially re GCA symptoms. ) I started prednisone June 24th and around September 1st might be a time to start 10mg with good luck.
This overall approach is consistent with the the UpToDate website guideline of ‘ 2.5mg every 2-4 weeks until 10mg, then 1mg every 4-8 weeks.’ We are attempting the quicker range and monitoring the results.
And this overall approach is also consistent , I think, with the BSR and BHPR Plan 4, version 1: 15mg for 3 weeks, 12.5 mg for 3 weeks; then 10 mg for 4 weeks, 9mg for 4 weeks… from Mrs. Nails’ links on this website.
I appreciate the discussion from this forum to clarify a personal ‘tapering plan’ and to learn to be flexible about what happens.
Thanks for the tip that causing myself a flare-up (by leaning toward rapid tapering) is a counter-productive idea.
Thanks, I will go minimum 3 weeks, maybe 4 on the way to the 10mg level. I’ll look at the general info. I have read the Kate Gilbert book : PMR and GCA Survival Guide (2).
And all those guidelines were drawn up by people who haven't done it themselves! Not sure Sarah Mackie does anything that fast - and I do know that if anything fails she slows down immediately. The look of horror on her face in a meeting recently when patients told her their rheumies didn't adjust the tapering when it went wrong was an absolute picture!
Good Luck with that. I’m very familiar with the 2.5mg step every “4” weeks from 20mg to 10mg and 1 mg thereafter and the stair-step decrease approach. I suggest you change to DL’s 5-7 week Simple Taper methodology. The former “stair-step” (NICE) resulted in me feeling whoozy 24 hrs after the start of the new dose and 3-4 days later possibly having a flare - and it wasn’t mild. At least with DL’s approach one is gradually introducing the body to a new dose and any flares are of less magnitude. Also the 24hr later response from a sudden drop in Pred disappeared and if I flared on DL’s Taper it was week 3, day 5 and was mild and easily recovered from.
Once get to 10mg literally used 10% decreases every 5 (usually) to 7 weeks. Meaning once at 5mg I was using 0.5mg decreases by cutting the tablet in half along the score line, then at 3mg using 0.25mg by cutting the tablet in quarters. Starting with wk 2 schedule to start as wk 1 , this is day 5 heading heading toward zero.
My Rheumy and I had some confrontations, then he relented. I’ve not had any confirmed Adrenal deficiencies, “I” requested a basal cortisol test when at 2mg/d which came back normal. IMO paying attention to body response, stopping a taper immediately at any sign of PMR pain and returning to previous dose for week or two before trying again is the best approach before trying to decrease and then I may do a 5% step instead of 10%. I’ve had a pretty smooth ride following this approach.🤷🏼♂️
I needed to drop by half a mg every 4 weeks to get down from that point. Alternate days seemed to upset my body. Slow but sure. It seems to get a bit cat and mouse as you approach 7 mgs ( in my experience). See tapering plans in FAQs.
I was diagnosed April 2019 started on 15mg. I have reduced to 2mg 3 times and each time had a flare.
I have been reducing half a mg every 5 weeks from 7mg and am on my 5th week of 3mg. I am pain free. There is no quick fix! Slow and steady is a better option.
I’m 2 years into my PMR journey and like you when first diagnosed was keen to reduce the steroids as quickly as possible. I would write up my diary ahead of time with my planned reductions only to then have to up my dose because of a flare and cross everything out. Every time this happened I would get depressed and feel like I’d failed. My suggestion to you is not to think too far ahead. Take it slowly. If you rush it you may be setting yourself up for more problems. Good luck, there is so much good advice on this forum🤗
First I want to wish you good luck with your tapering journey. Although It can be a quite challenging, I hope yours is a smooth one.
I was down to 4 mg in Nov last year til March this year. I fought with the pain, fatigue and at first thought it might be the adrenals so wanted to wait it out. Unfortunately all the symptoms came back full force so when I saw my rheumy in March she told me to go back up as high as 7.5 mg. I ended up going back to 15mg. She was not happy with me at all but I was not doing well and 15 mg was where I needed to be. I stayed there for about 4 weeks and began the taper I am currently on. I tried going from 15 mg to 12.5 mg but that did not work so went to 13.5 mg. Then to 12.5 mg and now almost down to 11.5 mg. My intent is to go 1 mg more then go to .5 mg at a time until I get back to 4 mg. After that we'll see. Hopefully this time it will work!
As others have posted, Life gets in the way and can cause stress which causes inflammation. I believe my catalyst to the start of the flare was the Covid vaccine I took in Nov. I then had all of my children at once having health issues so the stress from worrying about them was too much for me to even continue the taper.
I've had 4 relapses in my journey, 2 were due to the vaccines, 2 were due to much too fast of a reduction or both & stress. My Rheumy's taper method was reduce 5 mg at a time til you get to 15 mg, then reduce 2.5 mg to 5 mg. Then 1 mg at a time from there. I have had PMR since Aug 2019 but diagnosed in March 2020. I have passed my 2 years of being on pred and my rheumy is pushing to get me off even though I'm not having any major side effects so far. I did have some but they are being resolved or getting better. She also is pushing other drugs but I have refused. I'd much rather take the slow and steady than add new drugs with more side effects. So best advice is definitely take it slow and listen to your body. If you don't and try to rush you will delay the tapering and it just gets harder each time.
Hello. Thanks for describing your experience. It certainly reinforces the patient approach. It sounds like your doctor’s taper plan was out of line initially, not gradual enough. I appreciate your input and will keep it in mind.
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