Good evening everyone, I am considering dropping my current dose of 12.5mg a day down to 10mg a day and wondered what everyone thought.
I started on 20mg at the end of October. Last time I was on 10mg a day and then
12.5mg next day was on 4th May and by 4th June I had to go up again to 15mg due to the pain in my shoulders.
I have been on 12.5mg since 4th July. I am pleased to say that for the last 2 weeks I have been feeling great but a little scared to drop and feel unwell again.
Any comments would be greatly appreciated
Thank you.
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PMRMiltonkeynes
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Have you thought of trying the dead slow method to reduce
I started on 15 in Aug 15 managed to get down to 10 then had pain so went back to 12 only reduce by .5 using dead slow method going form 11.5 to11 . Takes a while but at present working well for me .
You could try this reducing 1 at a time click onto tapering steroids under topic on side of this page lots of information on tapering .
Hi I'm currently having to taper to have a scann and I'm having to drop from40 mg by 5 mg a week to get to 20mg by scan date . The nature of pmr for me is flares can come and go with various triggers especially emotional. And now tapering I'm all over the place along with what I imagine to be withdrawl symptoms from rapid tapering. I'm determined to slow to 'dead slow ' once I get to 20 mg based on what everyone says on here with their experience it seems to be what works for most . I also think in hindsight not to be hasty to increase dose if you can sit pain out it may well settle allowing you to continue tapering.... Hope this helps , it's not a one size fits all illness . Stay posative mentality x
It matter less if you are tapering down to get to a lower dose for a scan - the slow part is as much to identify the right dose for you as accurately as possible as to avoid the discomfort of reducing.
Hi. As has been said it is not a "one size fits all" answer. But what is sure for all of us is that the slower you taper the less likely of a flare or withdrawal symptoms. So if it was me, I would drop to 11mg for a week or so, See how that goes then drop to 10mg. I am using the "Dead slow" method and that is working great for me
Hi. I reduced slowly from 15 to 13 and immediately felt as bad as I did pre diagnosis especially with the fatigue. The next blood test showed inflammation had nearly tripled so back on 15 again a bit scared to reduce further cus doc thinks that I am at a plateau
I am also using the dead slow method, and have just gone down from 10mg a day to 9mg with a recommendation that after 6 weeks on 9mg, I drop to 8mg. I have come down from 20 mg initially over a five month period. it certainly works for me.
DMallett ( sounds a bit formal doesn't it!)do you mean that you are using dead slow method now? Was trying to work out how you went from 20 mg to 10 mg in 5 months using dead slow method. I'm trying to come down from 19mg at 1 mg per month( per rheumy's instructions) after a flare and onset of some GCA symptoms at 10.5 mg in January 2016.
I tried unsuccessfully to drop from 15 to 12.5, both times experiencing flares. I've now successfully dropped from 15 to 11 dropping by 1 mg at a time and using the dsns method. It seems frustratingly slow at times but so much better than yo yoing up and down.
Hi, I am in no way an expert on these matters but your story is remarkably similar to mine. The major difference being that I started on 15mg rather than 20mg at around the same time last year.
I found the big stumbling block to be around the 12.5mg 10mg area.
I yo yo'd around here for some time.
My problem is that living in Cyprus the 1mg pred are not available and I have to make the best I can with just the 5mg.
I have managed to get over this hurdle by using a slightly extended, dead slow nearly stop system and cutting the 5mg tabs into quarters making them around 1.25mg.
The way I extended the programme was to take each dose twice.
Let me explain.
7 days old dose
1 day new dose
7 days old dose
1 day new dose
6 days old dose
1 day new dose
6 days old dose
1 day new dose
5 days old dose
1 day new dose
And so on until.....
1 day old dose
1day new dose
Continue at this for a week or two depending on how I feel.
Then.....
1day old dose
2 days new dose
1 day old dose
2 days new dose
1 day old dose
3 days new dose
1 day old dose
3 days new dose
And so on until....
1 day old dose
7 days new dose
By which time I felt confident to continue with the new dose for a couple of weeks until starting the next 1.25 reduction.
This has so far worked for me.
As many people have found....
This disease is very different In everyone and there doesn't seem to be a "one size fits all" regime for medication reduction. Couple this with the fact that some of the doctors trusted with treating us have little knowledge of the associated problems and you can see that we all need to work out a plan tailored to our own bodies.
My advice, for what it's worth, is to experiment with reduction plans until you find one that works for you always remembering that it's not a race.
Having had a flare up coming from 15mg to 10mg, I am now reducing at 1mg every 2/3/4 weeks, currently on 10mg for the last 2 weeks, have always had some pain but nothing like before the preds! Go with how you are feeling, slowly. Good luck
Hi, I am a 68 year old diagnosed with PMR last October 2016. I started with 15 mg and felt better immediately after suffering from severe pain. My doctor say she cautious about reducing my prendisone. I went from 15 to 12.5 to 10 to 5 then 5 one day and 2 1/2 the next followed by 2 1/2 mg daily and now I am taking 2 1/2 mg every other day. My pain went from my left arm to my entire back. I am scheduled to see my rheumatologist last September. I think this doctor is reducing my medication too rapidly. She believes I will be off meds by the end of the year. I certainly hope so but I am concerned about relapse and GCA. Please let me know what you think. Wishing all you a speedy recovery.
Sorry - I'm not clear what you mean. Are you saying your pain is coming back as you reduce? If it is I'm really not surprised - that isn't how to use pred in PMR and it certainly isn't a "cautious reduction"!
You also say you were diagnosed "last October 2016" - we aren't there yet! Have you been waiting since last October to see a rheumatologist in September or will this be a recall appointment?
This is a far more realistic way of reducing pred in PMR and GCA - and for some people it is still too fast!
You could give it a go, you won't know till you do. I did the same but i couldn't wait to be steroid free and it was too soon so had to increase again. You will soon know if pains come back. Good luck to you I hope it's successful
Hi. I have been suffering for 3 yrs, and am now down to 7mg, but have found that trying to come down to 6mg, no way, back to 7, and this is what I find that, one has to monitor on ones own, dropping to suddenly is a no go. I have been on 7mg for the past 6 months, its a waiting game I am afraid, waiting for what ?, well, that it will leave me, as it arrived, overnight. I can only suggest patience. Good luck. Welsh pensioner.
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