I am a newbie to PMA and this forum and was only diagnosed on 28th April 21. My GP spotted it straightaway and put me on 15 mg of Pred and has now said that after 6 weeks on 15mg (2 weeks to go) I can put it down to 12.5mg. The GP has been great and been very supportive in answering all my questions and through all the great information you lovely people have provided on the site what makes sense to me is a slow taper as you suggest. I did mention that I had heard of it and the GP was happy to let me manage it going forward but wanted to try 12.5mg first with the caveat that if the symptoms come back with a vengence that I can contact him and revise it. My concern is that, from what seems to be the consensus here, reducing by that amount in one go is not a good choice. However could it be that as I will have only been on 15mg for 6 weeks when I reduce down maybe this is usual procedure for a Newbie? I don't want to break rapport with my GP as he is being very user friendly but I do have a fear that I might be about to hit a storm when I do reduce. Any advice/opinions you have would be much appreciated.
Reducing down Prednislone: I am a newbie to PMA and... - PMRGCAuk
Reducing down Prednislone
Hi there RymerAnother comparative newbie here. I was diagnosed in Feb so am a few steps ahead of you on the PMR path.
I was on 15mg for three weeks, went up to 20mg for a fortnight then back down to 15mg where I stayed for about 6 weeks before reducing to 12.5mg. Like you, I was concerned about making such a big jump so quickly and had a conversation with the rheumatologist about my concerns. My situation is slightly different as I am also taking methotrexate as I also have rheumatoid arthritis.
Like your GP my rheumatologist wants me to try her way first. I did quite a rapid taper of one day at 12.5, one day at 15, two days at 12.5, one day at 15, three days at 12.5, one day at 15 and so on until I reached seven consecutive days at 12.5 with no real ill effects. Those that I did experience were probably self-inflicted as I went back to work at about the same time (not ideal) and have been trying to prove that I'm superwoman (I'm not!).
My absolutely non-qualified opinion is that you need to try as your GP has suggested and see how it goes. If you have a bad reaction to a reduced dose of prednisolone go back to your GP and discuss (in stronger terms) a more gradual decrease. No doubt others will be along soon to share their experiences.
Good luck!
I am very sensitive to tapers, but I found 15mg to 12.5mg worked OK for me and I think it does seem to for a lot of people. My rheumatologist wanted me to go 15mg to 10mg which was definitely too much, although a male friend did it with ease. If you find you have a problem just contact your GP and you can easily increase, your GP seems incredibly sensible, hang onto them!!
This is the way my doctor told me to taper, and I have to say I have never heard anyone else say this is what they did, but it worked for me. I started at a place where ALL my various aches and pains were gone with a starting dose of 15 mg which I was on for four or five weeks. Then I tapered by 1 mg per week until I felt symptoms creep back. In my case it was at 9 mg, so I went back to 10 mg for three weeks. Bear in mind that I was down to 10 mg after just over two months on pred without ever making a big (2.5) jump down. I never at any point tapered by more than 1 mg, but the speed of the initial reduction was fairly fast.
By then I'd read about slow taper plans on the forums and asked my doctor about following something like Dead Slow Nearly Stop. She was agreeable. So from then on it was DSNS. It took me one month to taper 1 mg for several months, then I extended the taper to six weeks for lower doses, and eventually tapered by only .5 mg per taper. By the end of the first year I was at 3 mg. It took another year to get to 1.5, and actually most of the subsequent five years or so have been around 2 mg, more or less. No doctor can reasonably object to that and no one has ever told me I've been on pred too long and must come off.
A bit like you, diagnosed early Jan 2021, I started on 15. Went up to 20, then a month on 15, another month on 12.5 (no problems), now a week into reducing to 10. Just beginning to think this drop was a bit much - incidences of blurry eyes again, occasional feelings of feeling spaced out and wobbly.I can only suggest you give it a go and see. From what I learn from our experienced friends here, the slow taper becomes more important as the dose decreases. All trial and error for me at the moment. Good luck.
That is a perfectly usual approach to reducing the dose. If it works it is very useful - and it really does work fine for the majority of patients. You obviously have a really sensible doctor and he will adjust which is what he should be doing.
rcpe.ac.uk/journal/issue/jo...
Their reduction scheme is on the 4th page - exactly what your doctor is asking you to try. Dr Quick is now a consultant at Luton & Dunstable and still uses that approach because they found it works for the majority of patients.
There will always be some people who struggle - and some people find even 1mg drops hard work. Try this way first - if you develop pain immediately that is your body saying "Hey, where's my pred?" - it will almost certainly improve after a few days. If it doesn't improve, but gets worse, that is a sign it is the PMR flaringand you need to go more slowly. But give it a chance first.
Hi Rymer, I was on 15mg for 3 weeks, 12.5mg for 3 weeks and 10mg for 4 weeks before I started reducing by 1mg every 5 weeks. When I got down to 6mg I started reducing steroids by 0.5mg drops and have stayed on 5mg for a few weeks before I tapered slowly to 4.5mg as this could be a challenging level for most people. I am currently reducing from 4mg to 3.5mg. Drop from 15mg to 12.5mg was tricky for a few days, but I managed it and the next drop to 10mg was comparatively easy. So, you can be bold now when going back to 15mg is not as threatening as it will be when you get down to lower doses and you can increase your caution as you decrease your steroids.
I was on 20mgs for 2 weeks, dropped by 5mg to 15mg and now to 10mg. Will let you know in a couple of days how the big drop went!! Doc has said we will go to 1mg drops from here on
Hi Rymer, from my own experience I reduced quickly from 15mg to 10mg and then to 7.5mg. This is how my rheumatologist managed it. I had 3 weeks at 15mg, then 4 weeks at 10mg and then reduced to 7.5mg where I have remained since October 2020 (I was diagnosed in August 2020). Everyone responds differently, but I understand that if you're on pred for a relatively short period of time you can reduce quite quickly at first. Apparently it becomes more tricky the longer you're on it. It also depends upon the severity of the PMR symptoms. My non-qualified advice would be to work with your GP to see what works best for you. All the very best
My story is similar to yours- diagnosed recently. Started on 10 and after a few weeks down to 7.5 then few weeks later to 5- i had no probs and think this could be because I had not been on it for long. However this week went down to 2.5 - just feel a bit off and achey so going back up to 5 for a bit. So, I was ok with 2.5 drops and you might be too but this last one might just be a bit too much - my GP is happy for me to change as appropriate and I think that is the way forward. I am waiting for an appt at hospital so happy to go with the flow till then.
Hi RymerLike you I started on 15mg pred. when my gp instantly diagnosed pmr in March 21. He was very helpful and on his suggestion I reduced to 12.5 5 weeks later. It didn't work as the pain returned (although on 15 it never went away by the end of the day) and I am back on 15mg for 6 weeks when I will discuss how to move forward.
I have tried taking the pred at all different times and am finding 4 am is about the best time. Should add that I don't have problem sleeping
My doctor reduced me from 20 to 15 for two weeks then 12.5 for a month. Hereafter reduced. I had a fall and was put back to 15 for a month then reduced by 1 mg a month to 10mg then by 0.5 mg a month. I am managing on 9 and about to reduce to 8.5
Hi Rymer
I started this journey in August last year.
In my experience dropping 2.5mg from 15 to 10 was ok, although the three or four days after a drop were not great. I then had some problems. Work stress related i would say and went back to 12mg to calm down.
I then dropped 1mg per month down to 9mg and since then its a 0.5mg drop every month. Going to 7mg this weekend. Maybe i could drop 1mg per month and maybe it would end badly. Who knows. But i am keen to get this over and done with as best i can so drops of 0.5mg over 18 months sounded better than drops of 1mg per month over 9 months with a possible disaster in the middle and back to the start line. The 3-4 day, post drop, pains that i got before do not feature when the change is only 0.5mg. No question in my mind on that.
Sounds like we have a similar doctor. He has left me entirely to my own devices which i appreciate. Not sure he is the worlds leading expert on the subject but he conceded that dropping too quick was often counter productive. This can be contrasted with a rheumatologist at the outset who was adamant that i should drop by 2.5 mg down to 10mg and then 1mg per month thereafter.
By the by. I also split my dose. Complete fluke but it seems to work for me so far.
I am kind of assuming that odd aches and stiffness as well as feeling tired and a bit light headed at intervals are par for the course. Having to give up golf and cut down on beers has also been very irritating.
The forum is very helpful though.
Good luck
Great - thanks. I am not a control freak but do like to know there is a little game plan and all the info here on the forum certainly helps with that.
Hello Ryder,I was started on 15mg of Pred for two weeks then 12.5 mg for two weeks - down to 10mg for a month then reducing by 1 mg each month. I hit a blip at I think 6mg and with the help of this group, felt confident to up my dose to 7 mg for a further month. Then continued the tapering of 1 mg per month. I tried the half mil for a while but for me it made no difference.
I have now been off pred for over a year.
I have experienced anxiety issues and have been put on setraline 10 mg daily which has helped. Don’t think there was a connection with PMR on the anxiety issues though.
My advice would be to follow the drs plan and see how you go. Good luck.
I started on 25 mg end of January, reduced to 20 after 1 week, on 20 for 2 weeks, then 15 for 2 weeks, then 10 but this caused problems after 2 weeks, so went up to 12 for 2 weeks, then 11 for 2 weeks, then 10 for 2 weeks, and now on 2nd week of 9. Hoping to start 8mg next week, but see how I go ! Not easy is it ? Glad that you have a supportive GP. Mine is good too but he is keen to get me to 5 asap. He grasps that it is not an easy ride, but sometimes there is an internal drive to push myself too far. Wishing you well !
Hi Rymer. I have been on for 4 years...and now at 3.5mg. my drop from 15 to 12.5 was similar to what your Rheumy suggested and worked. My problem came when i was at 2.5 a year ago and wanted to drop too fast. I think DSNS is the ticket and I jumped the gun to mix my metaphors... and paid the price. (yet again! metaphor mix) anyway. I had to return to 8 and work my way back to where I am now. I will take it very very slowly. In the mean time Work those bones. I say stay away from Alondreic Acid bone meds like fosomax, but tap dance. heel drop walk a lot with some banging or jumping. and do weight lifting (lightly) if you can. I think biggest concern with prednisone is the bones. Good luck!
Hi Rymer
Hang on to that GP! Like you I've got a good one but so many people don't. Many GP's have no clue about PMR. As for Rheumatologists - I'll say no more of my continuing saga. My GP and I have decided on a different regimen to that suggested / demanded by the rheumatologist and it is working fine.
I started, 15 months ago, on 15mg, down to 12.5 after only two weeks then down to 10mg after 4 weeks. Since that time I have been following the 1 mg gradual taper over 8 weeks. Now down almost to 5mg and all is well - well, as good as we can expect with PMR.
As others have said, we all are different and we have to find what works best for us - and none of us knows what's round the corner. So having a GP who listens is so helpful.
Raymer, we are all different, each case is different, my PMR journey was 5 years with too many flares. Finally the method that worked for me was to reduce by no greater than 10% and use the DSNS reduction schedule. Good luck your journey is not a race, but if it was be the Tortoise not the Hare.😊
Are you in the USA, sounds like the approach my Rheumy used on me. Once hit 20mg/d then a 2.5mg decrease for 3 weeks and continue. Once (if) make it to 10mg/d then every 4 weeks decrease by 1 mg.
The 2.5 mg decease may work, it may not. I’m a bit peeved the Dr didn’t tell you if the pain returns to immediately go back to previous dose for 3-5 days and try a smaller decrease.
My Rheumy (I’m in MD) still is pushing toward zero, but understands my position and is working with me. My position? 10% reduction beginning at 10mg/d until I reach a dose that manages the disease. Zero would be nice but that’s not my goal.
I also told him I’m following a modified DSNS and not the stairstep approach which after when at the higher doses (they started me at 80mg/d 😡) I’d feel loopy 24hrs after reduction, then a flare also a couple of days later if too large a decease from previous dose.
I brought in hard copy of a research paper
I downloaded off this site and told him I could bring others. He relented, I didn’t ask, I said this is what I’ve been following for the past month and why.
I suggest reading everything you can. If need an interpretation ask for clarification. Be as knowledgable as you can be. I don’t trust doctors for as far as I can throw them so want to be involved in any treatments and have no problem asking why or saying let’s wait on that if not critical because I want to read up on it to be comfortable. If what they say doesn’t seem logical it raises red flags with me.
Rymer... OMG-- thats quite a coincidence that is my situation hundred percent what I've dealt with with my rheumatologist few months back and I tapered down to zero and all the pain came back again the prednisone has not worked that well for me ....so the dr is still dianosing me-- my pain in mainly low back, front of shoulders clavicle area...neck and back stiffness and chest area is sore and hurts to cough or sneeze...... I am 60 years old my issues started Sept 2020...Let's keep talking..NICK
If you tapered to zero of course your symptoms came back if you have ongoing PMR. PMR isn't a one-off event that you take a course of pred and it cures it. PMR goes on for years and only 1 in 5 is able to get off pred successfully in under a year. By 2 years the figure rises to 1 in 3. But half have PMR symptoms for over 6 years. You start with a dose that is higher than you are likely to need and then you taper the dose to find the lowest dose that gives the same effect as you got with the starting dose. If you are lucky it will be well below 10mg within a few months but that doesn't always happen and it may take more than 18 months to get to 5mg and stay there for 6 months.
In fact, a basic guide is that if you start with about 15-20mg pred and it is PMR, you will get good pain relief in a week or so. If it is PMR and you take pred for a week or so and then stop, the pain is likely to return in a similar time scale to how long it took to go away. Some doctors take that as a piece of evidence that it is PMR:
rcpe.ac.uk/journal/issue/jo...
Prednisone only works in PMR if you take enough and continue to take it as long as the underlying cause of the PMR symptoms is active.
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