I had reduced from 40mg Pred prescribed for GCA/PMR in May to 15mg towards end of October. I have been trying to reduce to 12.5mg since middle of November unsuccessfully as pain etc came back with a vengeance. Saw GP last Monday and he said to go back up to 14mg for maybe two to three weeks and this I did. On Friday, I did not feel well, shoulder/hip pain and yesterday felt really unwell with headache, hip, shoulder, groin pain. Later on in the early afternoon I took 1mg Pred and by evening felt much better. I went back to the 15mg today (I take it at approx 4am) and feel much better, only minimal shoulder pain. I am going to stay on the 15mg until after Christmas, do you think this is okay or should I try to get to 14mg ASAP.
Regards , Pat
Written by
PatB1948
To view profiles and participate in discussions please or .
Ultimately it is all about how you feel and what your body is telling you - and the last thing you want to do is anything 'asap'. Given most of us will be on Pred for probably 2-6 years then the fact you have only had a diagnosis for a few months means it very unlikely you would be at a 'low' dose already anyway. I was diagnosed a year ago and have tapered from 60 mg to 12.5 mg which I have now been on for a month or so as when I recently tried to taper to 12 mg pain turned up very quickly in my head neck and shoulders. So I returned to 12.5 mg and got relief within a few days - but if I had to go back further back up I would have. If I were you I would most certainly stick to 15 mg for now and perhaps attempt another small taper after Xmas - I have been using 0.5 mg reductions - but the DSNS method is very well endorsed.
Thank you Rimmy, I will do that and then perhaps try 0.5mg. I was trying to follow rheumie's guidance unsuccessfully as it says at this date I should be on 10mg.
Pat, the others have said it all, but I just wanted to say that your GCA/PMR doesn't know about dates and hasn't read the "guidance"! I would definitely use 0.5mg drops in future - I didn't and had a flare this summer, so now I am. My PMR didn't know about my 'plan' to drop 1mg a month and be off pred by this Christmas!! haha!
Me: PMR 19 months tapering to 7mg on DSNS 26 day schedule.
I thought this post got lost so this is a double post with much the same info.
Not an expert, but I think your attempts at 12.5 and even 14 have created an inflammatory situation that needs quieting at a dose you know manages your condition. It might be 15 for now or even a bit higher. You took 15 today and feel better. I would plan on staying there for a while until things remain stable.Then you might try one of the slower tapers, or tapering by .5. I had trouble going from 15 to 14 my first time, went up above 15 for a few weeks then steadily down by 1 mg to 9 from April to November. Now I'm a bit stuck going to 8.5. My Rheumy has agreed to my using PMRpro's 26 day taper from 9 to 8.
My instinct would be to stick at 15mg until after Christmas. That will give you time to stabilise again, and also, although you may enjoy it, Christmas is always a bit stressful (even in a nice way) - more hustle and bustle, slightly different eating and drinking habits, slight change in routine. All can make reducing more difficult - so forget it for a few weeks.
No matter what your Rheumy may wish/want there is no point in doing anything ASAP, that just leads to potential problems, if not straight away maybe later down the line.
After Christmas/New Year when you feel up to it then try 1mg reduction - if necessary using my, or other slow plan. As others have said there is no rush!
Thanks, DL, good advice from you all. We are going down to see our son and family in Hampshire for Christmas so I want to be as good as I can be for that. I'll have a look at the link you sent for slow taper and try again after festive season. Hope you are having a good time in NZ, I believe it is summer there so you'll be a bit warmer than we are in Scotland!
Been in the high 20s since I’ve been here, in fact in low 30s on Sunday ..SIL trying to make home brew and kept muttering about it being too hot! Mind he is part Welsh, so used to damp & cold!
Enjoy Hampshire (my county of birth) and Christmas.
I think this is a sensible decision Pat. You are far more likely to have a successful taper when the excitement of Christmas is over. Then I might try 1 mg drops using a dead slow method. I do my new dose one day of the week and my old dose six days, then 2 new and 5 old and so on until it's 7 new. This has helped me to 7 mgs and now I'm stuck and feel rotten at any less, so I'm resting here. Glad that I finally settled back at 7 mgs, I thought I'd blown it. Good luck, no point in pushing it.
Thanks, Jane. I'll definitely start a slower taper after Chistmas. Thank for replying, I like reading your posts, in fact, this is a wonderful site and we all learn so much from each other.
No - this isn't a race and your body and GCA/PMR are telling you they are not ready to go that low yet. It doesn't mean you won't get lower - just not yet.
Whatever the rheumy's guidance says, every patient is an individual and a pre-conceived reduction plan won't work for everyone the same. All the guidelines in the medical literature say that "reductions must be tailored to the individual" - handing you a piece of paper that says "do this" isn't individualising anything.
It is cold and it is heading to Christmas - bith stresses on the body. Leave the reduction until at least the new year - there are quite a few rheumies who discourage reductions in the winter.
So glad I went back to 16 mg when I was struggling the reduction to 14. Not reducing in the winter is great information. I felt so much better in Dallas when the temperature was 80. Seemed like a miracle.
Almost exactly the same timing & experience as myself PatB. with the same reduction plan that hit the buffers at 15mg. Gone back up to 17.5/20 myself & no head pain only tolerable neck /shoulder burning & stiffness. I see my Rhumy. in 3 weeks when I should have been on 10mg for 6 weeks. Ha! As our forum experts tell us this blighter of an illness takes orders from no one. Pain management must be the name of the game. Hope you're feeling better.
Are you reducing by 2.5mg at a time? Top experts say in a taper (as opposed to a reduction and what we are doing) no drop should be more than 10% of the current dose, By now that is 1.5mg at a time - 1mg for ease.
I only have enteric coated 1mg Pred as The normal tablets upset my tummy so I'll just cut down by 1mg starting after Christmas. Also what is the difference between a taper and a reduction?
Not sure this is official difference or if there is a difference but I consider reduction to be reducing regardless of symptoms on drs Orders. Whereas for me tapering is about monitoring your symptoms and adjusting dosage as symptoms change and landing, for periods of time, on lowest dosage that controls symptoms.
I just assumed it was a different word for the same thing. Another word is weaning, which implies that at the end there is complete cessation of the drug, but the process is the same as reducing or tapering.
I have a habit of using terms in my head that make sense of my experience. I spent years creating and challenging theoretical frameworks so automatically do it. I have noticed in this forum that many members start to use the term tapering/weaning once they start take some control of manner of reduction.
I did get confused initially in joining this site. Between the pred head and lack of medical knowledge of both the condition and its treatment I found it better to differentiate between what drs demanded and what was realistic as per people's experiences.
I've been very fortunate in that at the very beginning my doctor told me that I would have a great deal of say in how I took the prednisone. She gave me advice on how to start, and within just over a month I was taking charge, so I guess I didn't need to differentiate. I can see what you mean, but that will only work if there is a conscious consensus. Starting here?
Maybe. You were in a good position and its always good to hear of positive process.
I am quite happy for it to be an idiosyncratic understanding but if it helps anyone manage process that's ok. As a uk supermarket says...every little helps 😉
A reduction is when you use pred for a short time and then reduce to zero - my first 6 weeks of pred was 2 weeks each of 15/10/5 and stop. A taper is more subtle (and good doctors make the differentiation). They start you at a dose that is higher than you will need and then taper - slowly and in small steps to find the right dose for YOU. Another word is titration - adusting the dose in small amounts to find the exact end point. Never been a problem for me to understand - I did chemistry at school. Doctors are meant to have done science too - met a lot who obviously don't remember it though!
Is this a medical distinction? Because in terms of vocabulary reduce, decrease, taper, seem to be synonyms. Titrate doesn't necessarily mean to reduce (decrease, taper) it could mean increase. The word which doesn't really fit is wean, because that does mean to (eventually) disengage, so it's interesting to me that this is the word my doctor used!
A patient who was in a London hospital (don't know which one) as an emergency told me the doctors he saw there did differentiate and were adamant what he was to do was taper and explained what they saw as the difference.
I think a lot of doctors tend to assume patients are a bit thick or maybe they don't like to use anything that might suggest you aren't going to get off pred altogether. If you look it up they use tapering and reduction interchangeably.
uses the term more or less aggressive about various tapering methods. I suppose everyone has their own definition of what is slow. And maybe the average doctor doesn't consider pred needs to be tapered slowly - because they don't have to for short term use in most patients. My granddaughter had her asthma flare badly every time they reduced her dose. I suggested the steps were too big - her mother scoffed (a former chest unit nurse) but when she tried it, she improved a lot.
EVeryone is different - but if you go slowly, no-one is going to have a relapse.
I could not agree more wth all this great advice to stay at 15m...especially with the Christmas Season here. I guess it is the doctors pushing the need to taper when it clearly is ineffective when you are having pain. It is really quite simple, but most of us get caught up in the scariness of the prednisone....instead of using common sense. We all do it😊
I've had a terrible time trying to reduce too. One suggestion I might make that seem to help me a little bit is to split your dose. And then gradually reduce those two doses a day. I took a majority of my dose in the morning and then around 3 in the afternoon I took the remainder of my dose.
I'm tapering and currently at 15mg, I split dose 5mg at night between 1;30 - 3;00 or whenever I wake up to go to the bathroom...then the other 10mg "around" 8....still have morning stiff and sore hands mostly, still have a few worse days, I'm NOT going to try any tapering till after the holidays...then we will give it a whirl...why do something during a stressful time, (good stress or bad stress, doesn't matter to the body)...plus I may be flying to see daughter.....nope, no more tapering for me for a month or so...
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
6 years to zero prednisolone
Still no definate answers!!!
Yet another update
CRP 2, still in pain. 
Started tapering with some issues
