I am probably asking a difficult question - but I am wondering if any research exists about the duration of tapering and 'average' effective doses of Pred at various points in time - and please let me know if this exists - especially our 'experts' here !!??
I have expressed this rather 'unscientifically' - but I am interested in where others at 'at' with their tapering at various points in time say at 1, 2, 3, 4, years or more - stated simply as:
I am (for example) taking 15.5mg approx 1.5 years after my diagnosis of GCA
(using no other meds like steroid sparing agents such as Actemra or Methotrexate)
Obviously this kind of info comes up randomly here on this forum - but I cannot recall ever seeing anything like a collated or 'analysed' version - I realise to do this 'properly' would require proper scientific methods and data analysis - but it could be very interesting still to do this 'casually' and be able to make even some very general comparisons. I have mentioned only GCA here as steroid doses are usually much 'higher' and it would be confusing to merge that with PMR - although that could be a useful exercise as well.
Some might think this actually UN-helpful as we are all unique and tapering I know can be complex for all kinds of reasons - but just looking at where people are 'at' even just generally - would be interesting I think and offer some 'relativity' about what most of us might reasonably expect- in our future experience with this disease.
Many thanks
Rimmy
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Rimmy
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Hi Rimmy. Yes it would be interesting but only from a personal comparative standpoint I think. The problems I see are: medicine is not actually an exact science and because of the nature of PMR/GCA we don't even have any accurate diagnostic tools. Pred is often used to assist the diagnosis and starting doses vary. Whilst on treatment, tapering regimes vary, people flare and changes their doses and either drop straight back down or re- taper. All this makes comparison pointless I think.
As a group of patients we are already suffering from ignorance by Drs who have it in their heads that certain targets should be met in terms of disease duration and steroid dose reduction. Potentially the information you are suggesting we collate could have an adverse effect by back firing on us.My Rheumy told me he sometimes looks at this site! I dread seeing him because he is obsessed with tapering quickly and prescribing AA and doesn't seem to have learned anything from us.
What I think would be of value would be a mass data collection of starting dose and how long the disease lasted for before going into remission. I believe we have several thousand members?
Thanks for your comments - and to some extent I can see your reasoning - but my query IS just that - to make 'a personal comparative view' - so in terms of it 'backfiring I don't see how it could do so -given this is obviously not serious or proper scientific research with even the object of 'collation' but merely an impression of how others have fared or are faring 'so far' during their experience of GCA. And I certainly do not endorse the perspective of rigid timelines for tapering which take no account of the progression of the disease itself - and I am anyway assuming this info would likely demonstrate that pretty clearly.
To avoid complication I asked if people could just simply state what levels they have been at since their diagnosis (say after 1,2,3,4 yrs etc)- and not necessarily details like how often they had tapered up or down in between those years - so it is really just a snapshot of where we have got to by 'now'- eg. myself at 15 mg after 1 year and I am now at 15.5 mg after 1.5 yrs
I do realise however the 'devil is in the detail' of living with this illness and we are all individual. I appreciate your response and agree you that we need much more scientific research about PMR/GCA.
Yes I agree it might be interesting to “see” where different people are on their journey, however it might be more difficult to actually get the info.
Unless people have kept records they probably couldn’t tell you what dose they were on at certain times in retrospect. Personally I could, but I would guess that I may be in the minority. However, throw in the question, do you start calculating from the date diagnosed, or the date pains started, and that gives another answer.
Me:
1st pain to last steroid - 6years,
Diagnosis date to last steroid - 4.5 years *
Length of illness - 5.5years (sure it went into remission before steroid finished)
Total consumed -19680mg approx
Using * scenerio-start 80mg, 1 year -12mg, 2 year - 10mg, 3 year- 5mg, 4 year-1mg, 4.5 years - zero.
Thanks DL - I now see this could become complicated fast - but I suppose - given this is not a 'scientific' analysis but just an impressionistic one - just reading any info people wish to offer - such as you have kindly done - would be of interest. I was initially (rather simplistically) thinking of just where people have got to say in yearly increments from the time of diagnosis - but really the broader details you gave are much appreciated. I am surprised you had managed to taper to 12mg in just one year for example.
Yes, first year went well, but then we are talking high doses, so plenty of leeway. The second year dose looks strange compared to first year, but it was year hubby was very ill, in and out of hospital, eventually died, and although I didn’t have a flare, my ESR readings were high, so GP insisted I increase my Pred on 2 different occasions. I know in retrospect that high reading were due to stress alone, no return of GCA symptoms.
So that’s another complication to throw into the mix. No wonder we don’t achieve the “magic” 2years scenerio! That’s why I’m always saying - it’s only a plan, it can be changed! Wish doctors would appreciate real life has a habit of getting in the way of a nice neat taper 😏
Thanks DL - a perfect example of how the 'best laid plans' can and do go awry - but interesting to me personally as I have wondered about other factors like stress can be interpreted as 'flares' and how difficult it is to tell the 'difference' when 'life' is doing its worst anyway !!
Sometimes stress can generate a flare I guess, which would then give you a return of symptoms. However, as I said mine was just raised ESR, which as we know can be triggered by many things that are nothing to do with our illnesses - colds, flu, bereavement, or just the normal stress of trying to cope with life.
I have had GCA and PMR for 2 years. When on Prednisone, I could not taper below 30mg without my inflammation markers increasing. By adding Actemra, I now administer a shot every week and on 2 mg Prednisone.
From what I have read, it seems everyone is different.
However, I agree that it would be nice to reference more studies conducted on this disease.
Good luck trying to gather data for your study! I started 1 year ago. 25 mg of Pred was necessary to relieve pain. Now tapering from 8 to 7 in 3rd week. This decrease has been iffy because I experienced wrist and fingers pains and stiffness that just stopped today. I will stay at 7 for another 2 weeks before attempting another drop. My Dr. is cut and dry about this. If blood markers are normal she says keep decreasing. Luckily, forum friends have greater influence. Add 95 year old mother and 13 year old blind dog who I’m holding onto and predictably of Pred reduction is impossible.
No - there are no published studies on dosage or approaches to tapering with corticosteroids in PMR or GCA apart from the ones done with Actemra. The Leeds group started a study in PMR a few years ago which is using the Dead Slow Nearly Stop approach to see how patients get on with that but I don't know where it is at at present - there was a hiccup when the person doing the recruitment and admin left to a better post...
In the past they used to use 30mg or so as a starting dose for PMR, then they decided that was probably too high, exposing patients to unnecessarily high totals of pred and suggested 15mg would do the same job. I think the basis for that might have been a study by an Italian group under Salvarini which found that 12.5mg achieved symptom resolution in up to a month in 75% of patients. Small women did better than large men in this regard - and that has given rise to some doctors believing the dose is related to weight (no, not really, other factors are involved). That maybe fine for PMR - waiting a month for GCA isn't an option! And really you can't mess about with pred dose in GCA too much - it MUST be high enough to reduce the inflammation quickly.
But the variables are legion. There is the pred bioavailability for a start - do you absorb 50% or 90% of the dose you take, or somewhere in between? That immediately means you don't really know what amount worked for you - they don't measure that. Then there is the activity of the underlying autoimmune disorder - is it just trundling along at a trot or is it in full gallop? It is almost certain that that varies with time under the influence of various factors including various forms of stress - infection, trauma, emotional all play a role. How do you assess that? Then there is activity: someone who needs to work almost certainly will need more to function than someone who is retired and able to lay low on a bad day.
But above all, the pred has no effect on the autoimmune problem - it is just mopping up the inflammation created while the real illness is chugging away in the background. And it goes on for differing lengths of time. So one person may need barely 2 years from the start at 15mg to reduce steadily to zero - and they may never have a flare. Others may be able to reduce a bit and then get stuck however carefully they proceed, others overshoot, don't realise they have or have a doctor who doesn't understand and they don't increase the dose to ride it out so they end up back at the start, needing a high dose and to start that reduction plan over again. Others will be like me - the activity of the disease may never fall enough to get off pred altogether but they achieve a low dose, 5mg or so, and are able to get along with that for some time until they have a flare due to an increase in the autoimmune activity.
What we DO see repeatedly on the forums is that careful reduction in small steps is far less likely to lead to a flare due to overshooting the right dose. Doctors assume that flares are inevitable - but there are quite a few people on the forums who got to the end with only minor hiccups where they overshot, realised and adjusted quickly and waited a month of two before continuing their reduction.
But really - the blood markers are only a guide and top experts have said in the past that raised levels of either should never trigger a kneejerk increase in the dose in the absence of symptoms. And vice versa - symptoms without raised markers should be considered a flare and require adustment of the dose unless there is a very good indication it might be due to overuse of particular muscles.
Just seems normal to me. (Though I had to go back and have a look to know what it was!). It's just like answering an exam question (for example) - collecting what you know and putting it into text... I find it very enjoyable.
Like I said...you are amazing❣️ Thanks for giving so freely of this accrued knowledge...and for being able to repeat (!!!!!!!) endlessly for those who come along later. You have continued to be an anchor for me, and others, who bump along this PMR road.💜💜💜👏🏽 J
I've just reread that reply above and it's enjoyable to read! I don't know how I would have managed without the advice you've given over the past few years. Thank you!
Hi Rimmy. 1 year on GCA positive biopsy . 40mg for 4 weeks. Reduction to 30mm. in 1 week. Reduction to 20mg in 1 week. (TOO FAST! But going crackers at the time!) Now on 15 mg. 4 flares going back to 20 each time. 15 seems to be my sticking point at the moment.
Thanks Pepperdoggie - we are all different i know but we all seem to often share the ups and downs despite our best efforts. I have had to go back up from 12.5 to 17.5 once - and now on 15.5mg going down 0.5mg more slowly - just every two weeks and I am even hesitant at 15.5 as I suspect again I am on the cusp of what i still need.
Do you permanantly work on 5mg decrements? Once you are at 20mg 2mg should be the maximum and since you flare at 15mg it sounds as if actually 16mg would be better. Even 1/2mg can make a massive difference.
No I am as I think I said now decreasing at only 0.5mg per fortnight - anything more than that i'm sure wouldn't work for me and I'm even a bit worried that may be crossing the line (again) once I've got to 15mg - time will tell I guess.
It tells you who you are replying to, unless you are replying to the initial post. So this will tell me I'm replying to Rimmy, but if I replied to the original post it wouldn't.
I realise that HeronNS but in this instance I recall (tho haven't gone back over this and may well be 'battier' these days) - that my email told me someone replied to one of my responses but they were actually replying to someone else who had also responded - and none of us to the initial post. (LOL!!)
I think I know what you mean. If I write a post I then get all sorts of responses saying that I've been replied to but in fact I haven't, it's a conversation between other people writing in the same thread. On the other hand if I follow someone else's post the notification indicates that someone has responded to the post, unless they have specifically replied to me in that thread. It can get a bit disappointing when you think you've written such a brilliant post that everyone is flocking to write back to you, but then you find it's a tangent, although the tangents can be very interesting in their own right!
PMRpro. 20mg is the default it seems for me! Always too fast for my own feet! Quite right advice but you know how is on the front line of awkward.! Ta.
I was diagnosed in April 2017.I started at 60mg and decreased every 2 weeks ( 60,50,40,35,30,25,20,__ 25,20,__22.5,20,17.5,15,__20,17.5,__20,25,22.5,20 ,) The doctor increased every time my esr and crp were high. We then decided that 17.5 might be a little too much so we decreased by 2 every 2 weeks instead of 2.5. I have gotten to 10 using this plan. The ups and downs earlier could have been the 2 uti`s and head cold( with a bad headache) I had. Now I spend more time outside and am getting more exercise. I started Methotrexate in December. It took awhile to get to the 20mg( 5,10,15,20). I also felt it took another month to really take effect. Doctor did suggest Actemra too. I resisted because not enough is known and I seem to be doing better.When I asked about length of time to be on Actemra he said it`s too new to tell. The decreases by 2mg of pred were hardly noticed. Hopefully now decreasing by 1 mg and then .5 I will continue my positive progress. I still have fatigue but that could be the weight I gained holding me back. I had never had any illness before this, unless you count the mono when I was in school 55+ years ago. One last note my GCA was diagnosed with a biopsy . My symptoms were vague headache( i thought sinus) Itchy head( not really painful) fatigue, generally not feeling well, when I got double vision was when I knew something was really wrong. It was the eye doctor who recognizesd it and sent me to the er. I realize I told you more than you asked but it explains my experiences. I too wondered if there is research out there.
Many thanks - your 'process' is interesting for me personally as I was only diagnosed 3-4 months earlier with GCA (PMR a few weeks earlier) than you but I am still now on 15mg decreasing only 1mg in a month at 0.5mg decrements every fortnight. I have also had to increase my dosage again a couple of times but as my blood markers have never been very high I have been responding to the return of symptoms only. I have avoided any other steroid 'sparers' as my side effects haven't been too onerous (so far). I also have fatigue on and off and have come to see this is just part of the 'deal' and I must try to pace myself when I have to - not always easy as I'm sure you well know. It is also interesting to me your initial GCA symptoms sound similar to mine - the sinus pain (mine felt like my whole face and head) especially which is not very often referred to here or elsewhere. But you generally sound like you are doing quite well so all good wishes for your ongoing 'progress' and thanks for your response.
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