you would think after 2-1/2 years of PMR and my share of flares that I would know when the time is right. I have my notes of how many weeks I have spent at each dose...starting from 15mg a day...however, I have made mistakes. How long should you feel "stable", most pain under control, until you attempt a reduction?
Is there an answer?
I can only describe what I do... I wait a week or two after completeing tapering. If I had no symptoms during the reduction, then that is usually sufficient. If I had any symptoms I would wait longer, for body to acustom to new dose. Assuming that you use DSNS method .
If you use the dead slow approach - a week or so should be plenty. If you drop from one dose to the next overnight so to speak then you probably need a month at the new dose to be sure. But nothing is sure!
I always use the DSNS method for tapering, but too much activity in August caused a bad flare. Had been good at 7-1/2m for a month or more....had to up the dose to 9-1/2 to get relief from the flare....since then have used the DSNS method to get to 8-1/2. Have been at 8-1/2 for 5 weeks...feel good. So afraid to rock the boat😊
Which sounds as if you are getting to about your "lowest dose" - for the moment at least. It is often harder to get down again after you have had a flare - which really makes me feel that the disease activity goes up and down. When it is down it may be easy-ish to reduce the dose but then as it goes back up you need a bit more than you did before. You ahve to wait for it to wane again!
Good advice😊 Thank you Eileen; will wait a while to reduce....
It really is a case of suck it and see - if you can manage to reduce 1/2mg at a time that is great and worth trying. Unless you try you don't know - but never try to force a reduction and never feel pressured to reduce. It isn't a race - and remember who won? The tortoise ...
I just wanted to say thank you to everyone. This site has been so informative. I was diagnosed with polymyalgia in 2013 and four months of Prednisone seemed to get rid of it. Then in March of 2016, I was diagnosed with GCA and have been on high doses of Prednisone ever since. I'm finally down to 18 mg from 60 mg after several flairs. I feel so awful from the Prednisone...bloated and just all around yuck. My face is so full that I barely recognize myself in photos. Can't wait to get below 10 mg. Wishing everyone better health in the future.
Pam, I have to say that your rate of reduction with PMR in the first instance and now with GCA is very scary for me. Please be careful and don't risk a relapse.
Yes Pam - I have to agree with Jean. No wonder you have had flares reducing from 60 to 18 since March!
I'm wondering about differences between reducing from the high-dose GCA treatment vs. the "usual" PMR initial dosage of perhaps 20mg or less.
Seems that many physicians (and patients, on their own) will prefer to see biger reductions initially, as a test of whether they are perhaps starting at a higher dosage than needed. As symptoms return, the dosage requirement (in real time) reveals itself, and the slow tapering begins.
Is it the same with GCA(?), or is the dosage level far more cautious? Is there a "rule" as to what is a safe rate of reduction from the dosages prescribed for GCA, or is the patient on their own in detecting a return of (GCA) symptoms and reducing according to need?
It does seem that with the side effects from larger dosages, that every opportunity to reduce would be considered, whereas patients who are affected by typical PMR might, for example, choose a more comfortable level of symptoms instead of challenging each level of dosage to be a bit lower.
As for making each step toward a lower dosage, I try to create some fasting effect, diet vs. exercise, in order to prevent any sort of flaring up of symptoms, and so far, so good. I have little extra in the way of body fat percentage to utilize, but so far have achieved quite-noticeable imrovements within just a 2-3lb window of weight fluctuation. My rheumy concurred, but cautioned me about his concern for one of his patients who apparently starves himself in order to relieve symptoms of severe and disfiguring arthritis.
Not getting you!
The purpose of the reduction is to find the lowest dose that manages the symptoms - once you find that there may not be a further reduction possible for some considerable time - you have to keep trying small reductions to see if you can but it isn't the end of the world if you can't. There are no real "rules" - above the way the patient responds to the reduction.
The high doses for GCA are used less because the inflammation is so very much more serious (though it often is) but because of the fear of loss of vision which is a real one and you have no way of knowing how close it is. So you use a really high dose to achieve a speedy reduction in the inflammation and, above all, the swelling which is what poses the risk. By definition, it is very very likely that you are using a higher dose than you might be able to get away with - but you cannot take that risk. Once vision has gone, that is it, no going back. If one eye goes, in most cases the second will go within weeks. That is the reason for the need for quick diagnosis and treatment. Everyone has a different "bioavalability", the amount of pred they absorb, and is ranges from 50-90%. You might say, 40mg is always plenty - for 90% absorbers that is still nearly twice as much as for a 50% absorber, and 20mg may NOT be enough.
Then you wait until all the symptoms are stable - up to a month generally - and then start to reduce. At these high doses 10mg at a time is probably realistic although top experts said some years ago that no reduction should be more than 10% of the current dose - to reduce the side effects. So really on that basis, 5mg would be more suitable right from the start. We often say - 5mg every 2 weeks is the same as 10mg once a month - but is likely to be less uncomfortable for the patient in terms of withdrawal symptoms. For some patients it can take a full month to recover from the change in dose. High dose pred is unpleasant, high dose pred AND withdrawal symptoms is worse. And sinc ethey are very similar to the symptoms you are giving the pred for - how do you know which are which? Is it withdrawal - uncomfortable but not risky? Or is it a flare because the dose is not high enough - risky?
In the case of PMR the only reason for taking pred is to manage the symptoms and allow reasonable comfort until the disease burns out - a study in Italy suggested that for 75% of patients a dose of 12.5mg would achieve the desired result within a month. Given the state some patients are in, they don't want to wait a month! I spent 5 years without pred - I don't want to go back there but it wasn't the end of the world. People suffer far more than I did then. Had I not been put on pred I might feel different now - over 12 years with no let-up and no hope of let-up in the pain would have taken its toll I think.
However - in the past they used higher starting doses for PMR and it seems to now being thought that that achieved better long term results, fewer relapses perhaps. Now they are saying the lowest dose that works in the range 12.5 to 25mg. There are patients who have started at 10, one even at 5mg and it worked - but the consensus is that starting low and creeping up is not good, starting higher and moving down is better. With PMR I can see no reason why most patients can't use the dead slow approach almost immediately to reduce 2.5mg at a time - if it works then you have reduced a lot without much discomfort. But if it doesn't work you have an unhappy patient - who may not be compliant in future.
There are recommended approaches to reducing in GCA and PMR - whether they work or not has been the subject of discussion here on the forums for over 7 years. The general opinion seems to be that they may be over-optimistic - which is why the Dead Slow approach was born. Originally it was for reducing below 5mg, then we realised there were patients who were struggling to reduce even at above 20mg, especially if they had been reduced too fast and flared. So we suggested they tried a slower approach - and we had several who then got to levels far lower than they had ever managed before. Without using methotrexate an co. For most patients at the high doses though 5mg at a time generally works - some start at 10mg drops, if it works all good. If it doesn't - they try 5mg.
Is that what you meant?
Thanks, it confirms a lot of my understanding based largely on what you have explainedin the past.
Obviously we're on the same page as far as basing reductions on symptomatic response.
I did wonder why it seemed that many of the GCA patients who have chimed in here were able to achieve a 50% or so reduction within a seemingly very short time. So I wondered if it was their doctor's perhaps basing the reduction schedule on blood tests or other criteria. So I
suspected that GCA has a very different response rate to medication and the ability to taper more rapidly from those required higher dosages.
I'm guessing again, but perhaps with higher dosages, and with dangerous symptoms, that doctors increase their monitoring of the patient's bloods and other markers/symptoms, allowing for bigger-step reductions to be made safely(?).
Or is it just that bigger steps are simply in proportion to the higher dosages(?), not quite what patient's reporting here has led me to believe.
"perhaps with higher dosages, and with dangerous symptoms, that doctors increase their monitoring of the patient's bloods and other markers/symptoms, allowing for bigger-step reductions to be made safely(?)."
I doubt it to be honest! A lot of doctors just take a sheet of paper with a reduction schedule on it and follow it blindly with little concept that for some people it simply won't work in the time scale they are looking at. Apart from anything else, the ESR/CRP can lag behind the development of inflammation. In some people they don't rise at all while they are still on any quantity of pred - others are lucky in that they do track the inflammation but even in them they won't rise until the dose is already too low - by definition, you are looking for the lowest dose that manages the inflammation. If it manages it, there won't be any to produce the proteins that lead to the rises. The theory is that CRP rises acutely - I'm far from convinced it does. It possibly does in some people, but not in everybody.
Unfortunately there just isn't a better monitoring option yet. A study done a few years ago did identify that there was evidence of inflammation in various sorts of vasculitis, including GCA, even after 6 months on high dose (over 20mg) pred even though the patients were asymptomatic. This was based on the prescence of specific white blood cells, neutrophils, in the tissue. It required a special blood test to identify but it isn't actually particularly expensive so, if they did the large scale study it could be done. Needs money...