I have had PMR since January 2015 and during that time have been studying for a BSc Degree in Computing & IT. For my final years project I came up with the idea of developing a steroid taper web application as I have been following the dead slow nearly stop taper which has helped me, following a flare last year, get down to a daily dose of 4mg.
The application is being designed to help those of us with PMR and/or GCA to plan tapers of prescribed corticosteroids, typically Prednisolone and PMRGCAUK have very kindly agreed to act as my client. The application will act as a repository for medically-validated and referenced taper plans. Registered users will be able to select one of the plans and produce a personalised schedule that will be displayed on a monthly calendar. The dose to be taken each day will be displayed beneath the relevant day. Functions to support this activity will include users being able to update their schedule by choosing a different taper or by editing their daily schedule.
The first prototype is now ready for testing and evaluation. I would be really grateful if any willing members would take a look and try the application.
This is the link to the application and although you will need to register to create a schedule, the registration process is really simple and I am not asking for or storing any personal data -
When you have had chance to look through all areas of the application I am asking that you provide some feedback by completing the first survey. There is a link to the survey on the home page of the application. At this stage I have been more concerned about the functionality of the application rather than the aesthetics. Your feedback will help me decide what changes need to be made to this prototype before moving on to designing the next prototype so your opinions will be really useful.
Thank you so much for your time.
Best regards
Sandra
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. Then reduction by 1mg every 4–8 weeks or alternate
day reductions (e.g. 10/7.5mg alternate days, etc.)"
I have broken this taper down into versions (although I have only created 3 so far). The first version is where the prescribed dose of 10mg would be for 4 weeks so the taper reads 15mg for 3 weeks, 12.5mg for 3 weeks, 10mg for 4 weeks, 9mg for 4 weeks, 8mg for 4 weeks, 7mg for 4 weeks, 6mg for 4 weeks, 5mg for 4 weeks, 4mg for 4 weeks, 3mg for 4 weeks, 2mg for 4 weeks, 1mg for 4 weeks - a total of 46 weeks !
I do need to break this taper into further versions though as the reduction by 1mg could be for anywhere between 4 and 8 weeks which of course would extend the length of the taper.
Sandra, this is an amazing resource! I'm doing the DSNS taper, but doing it 1 day new dose, 4 days old dose. I see you have done three versions of the BSR guidelines with the 4, 5 or 6 week intervals. Is there any chance you could do the same for the DSNS taper, with 4, 5 or 6 day intervals? PMRpro sometimes suggests this can be tried. I just worked out that by New Year's Eve 2018 I could be down to 0mg on the 6-day intervals!! Something to celebrate, then?
Sandra, do check with PMRpro, but what I do is completely omit the 6 day steps that you have included at the end of your two versions - also the 5 day step at the end of version 3. In other words, start and finish with 5 days in version 2 and start and finish with 4 days in version 3. However, this is just my modification of PMRpro's DSNS taper and you should ask her what she thinks about us doing this! I think that other people modify it by staying at the new dose for a week or so before starting the next taper - so there are lots of possibilities!
If you read the stuff along with the timetable I'm pretty sure it says that if you get to 4 days new, 1 day old and feel you are fine, you can just go all new!
None of it was ever intended to be prescriptive - even I don't do it to the letter! Sometimes I repeat a step, sometimes more than once. It all depends on how I am feeling and what is on the menu for the week. I may start a "batch" and discover with the first few one-off days of new dose that I don't feel so good on those days and so I just keep doing single days of the new dose at intervals until I feel "better".
The whole basis of the concept is to present the body with the new, lower, dose of pred just one day at a time and then go back to the familiar. After a few essays, the body generally will think "Oh, OK, that's fine, I'll be back to normal tomorrow, I won't protest." By half way, either dose is "normal" and a few really sensitive souls fell less well on the old dose days!
Everyone is different - and PMR and our bodies change all the time. Which, I suppose, is why I am rather unconvinced by the idea of an app where the future is mapped in such a fixed way. New patients really don't appreciate yet how variable life with PMR can be - in all ways. Once you really have the relevant experience you probably don't need the app!
Using DSNS you mean? There are people who do it for 2.5mg drops. But the fundamental approach in tapering is to keep the reduction step to not more than 10% of the current dose - and at 15mg that is already well under 2.5mg. 1.5mg is a fiddle so why not just use 1mg, whichis easier and even less likely to cause trouble.
Originally the DSNS approach was thought of for under 5mg, then we realised that people struggled at every level - one lady flared because her doctor's reduction was far too fast. She needed over 20mg to get it under control - and then struggled to reduce at all using 2.5mg drops. We suggested trying 1mg at a time and she got to 10mg. That was just going from every day one dose to every day the new dose overnight - but it is also a long time ago!!! Everyone is different - but when anyone struggles with their current dose I suggest DSNS. Below 15mg it's a no-brainer to me.
Ok I'm going to try (again) - I found 20 to 15 relatively easy, then I've been yoyo ing (and dr told me to go from 10 to 5 whilst my dr was on paternity). So back up to 15 for a fortnight, dropped to 12.5 on Monday of this week and felt like I was cured! I couldn't decide if it was the pred, that I'd cracked 'pacing', or my thyroid medication had taken affect or my vitamin regime is working. This lasted until Thursday afternoon when it was as if my legs had been knocked out from under me! So I'll go 15 today and start the DSNS from now?
(51, diagnosed December 2016 and really struggling mentally - I could cry....)
What a great idea! Just looked at it, seems easy enough to use. Well done. Is your intention to eventually make this an app you could have on your smartphone?
Hi. Just thought I would join in here. The taper plan 1 seems to be based on the info from rheumatologists V Quick and JR Kirwan from Bristol Royal Infirmary. They do recommend staying on 10mg for 1 year. Hope that helps. All the best cc 🤗
Great idea. I'm currently using the DSNS approach after a terrible flare at the end of last year when I then had to increase my dose. I've registered to use the app and set up my tapering schedule. I did find it hard to work out how to input where I currently am on my programme but seem to have worked it out. It will be very easy for new patients to use when they are beginning their Pred journey. I'm assuming I can access it on my iphone, haven't tried yet!
I think it will be really useful as I have had to write out my planned taper and I was getting bit confused with all my dates. Look forward to seeing how it progresses.
I'm probably more familiar with all these proposed tapers than most - and I would say you have fallen into the same trap as a large number of doctors seem to. In particular, you cannot take the BSR/Dasgupta suggestions as a straightforward reduction. You have ignored the next paragraph after the suggested timings:
"However, there is no consistent evidence for an ideal steroid regimen suitable for all patients. Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course. Some benefit from a more gradual steroid taper. Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes."
And that really is the crux of reduction. It is pointless to plan ahead even beyond the current reduction - to plan the entire reduction to zero is next to impossible and more often than not is setting the patient up for failure and disappointment. You HAVE to be flexible in how you go about it . Even with the DSNS approach, some people can manage 2.5mg at a time down to (say) 10mg. Others struggle with even 1mg at a time and have to test each step carefully as they do it. There are so many variables to think about that make general assumptions about reductions is quite difficult - bioavailability of corticosteroids (anything between 50% and 90% and never measured in patients), activity of the underlying autoimmune disorder, comorbidities, to name but three. Top experts have said for years that the most common cause of a flare is reducing too far or too fast - and both are a risk of a specified reduction plan.
While I appreciate many rheumatologists and GPs labour under the delusion that PMR is done and dusted in under 2 years, that really is not the case for a lot of patients. An Italian group (from Salvarini's department) found that about 1/3 of their patients in their study on methotrexate as a steroid sparer still required steroids after 6 years - whether they were on mtx or not. The wider consensus on duration of PMR is more like 5 years (the standard German rheumatology textbook quotes that). Dasgupta and Dejaco's ORL Pocketbook says "Given that a response to the initial therapy is achieved [starting dose 12.5-25mg/day] , the dose should be tapered gradually reaching 10mg/day prednisone equivalent within 4-8 weeks; thereafter (assuming remission of the disease) the daily dose should be decreased by 1mg every 4 weeks until discontinuation.". You cannot assume remission of the underlying autoimmune disorder in such a short time - drug-induced remission yes, nothing more. And drug-induced remission requires an adequate dose of corticosteroid.
In the 8 years I have been involved in the forums and had contact with hundreds of patients I think I can count the number of people who have got off pred in 2 years on my fingers and toes! At least half of them were men (it is widely accepted that men experience both PMR and pred differently from women), and a couple of the women have had relapses, one who had GCA and got off pred in 2 years despite a horrendous first 6 months has now developed PMR 4 years later. The vast majority have taken around 4 or 5 years. A few of us have had PMR for over 10 years. I really do think that suggests you may need to take a much broader view of the timetables, especially in the two approaches piglette mentioned.
Before I would consider using an app I would like to know more about the practicalities. How easy is it to reprogram your app when you hit the buffers and have to go back? Or realise you need to stay on this bit for longer? I use a calendar and a pencil - alongside that I can note how I felt at the time, problems that arise - and looking back I can at the same time see how symptoms and dose changes related. Can a facility for that be made in an app?
It is a great idea - but I am very worried about the suggestion to the inexperienced in PMR that you can plan your "off-pred party" with such accuracy so far ahead. On another forum yesterday someone commented that "everyone learns the hard way that reduction isn't a straight line graph".
Here is an example of how the Steroid Taper Web Application could work (Josie is a fictitious lady):
Josie was diagnosed with PMR on the 1st January 2015 and her medical practitioner has prescribed the Royal College of Physicians of Edinburgh Plan for PMR. Josie uses the application to schedule in this taper. Her schedule runs from 01/01/2015 and ends on 09/01/2017.
Unfortunately, in May 2015 whilst Josie is taking 10mg a day she experiences a flare. Her medical practitioner suggests she increases the dose to 15mg for two weeks.Josie selects the user-defined taper and increases the dose to 15mg for the period 11/05/2015-24/05/2015. The application gives her the choice of first deleting all records after 11/05/2015 or deleting just those records between 11/05/2015 and 24/05/2015.
Josie chooses the second option. The increase brings the flare under control but she decides to drop down to 13mg before reverting back to 10mg. Josie again selects the user-defined taper and changes the dose to 13mg for the period 25/05/2015-07/06/2015 and chooses to delete just those records between 25/05/2015-07/06/2015.
Her schedule now shows that she should go back to 10mg on the 8th June 2015.
Based on the original taper, Josies' next drop, to 9mg is scheduled to take place on the 28th March 2016. However, Josie has agreed with her medical practitioner that she should try the dead slow nearly stop taper. This time Josie selects the Dead Slow Nearly Stop taper with effect from the 28th March 2016. The system warns her that her existing schedule from the 28th March 2016 will be overwritten which is what she expects. Josies decides to try a 1mg taper to reduce from 10mg down to 5mg.
Josies schedule now shows that she should be on 5mg by the 12th December 2016. Josie may now choose to select the DSNS taper again from the 13th December but this time try a 0.5mg taper.
This is just one example of how someone with PMR might plan a taper schedule but will most possibly have to change it and select different tapers during the course of their illness. By enabling users to mix-and-match between medically-validated tapers and their own user-defined tapers I was hoping that this would provide users with the flexibility needed to help monitor their steroid doses.
There is nothing wrong with using pen and pencil and I know some people will prefer to use spreadsheets - this application is just another option that I hope will make it quicker to plot and keep updated their own personalized schedule. My intention is for it to also be a repository for the many taper plans that I am coming across and to produce a cumulative report and graph that may be useful in discussions with medical practitioners.
Sorry, I'm afraid I'm not convinced - I know people who do IT think computers can do everything but sometimes good old pen and paper is just as good!
Given the general population I have met with PMR/GCA, I'd suggest the demand for an app isn't likely to be enormous! Many struggle with the forums and writing a post - that description of re-doing the app is enough to put me off and I think I am pretty computer-savvy. I also wouldn't "mix and match" different tapers - the DSNS approach can be faster or slower, its purpose is to smooth the drop that is the usual problem for patients adjusting to the change so why make it more complicated?
And it actually reinforces one of my cavils: the patient starts off with a taper that has her expecting to be off pred by a date 2 years down the line. Most patients are given to believe that by their doctor in the sense of being told PMR lasts a couple of years and then they will be off pred. It goes pear-shaped, through no fault of theirs and they are downcast, their doctor may even insinuate they "failed" to do it "right". I have really lost count of the number of people who have found one of the forums, all 3 of them, and said much the same thing. We have asked rheumies why they say it - because they don't want to depress the patients at the outset they claim. Unrealistic expectations all too often lead to distress on the part of the patient when it doesn't work. I have spent a lot of time trying to explain that!
I have to agree with PMRpro. My tapering history and current very flexible plan would be of no use to anyone. I have had to modify the dose, timing of dose, sometimes splitting the dose, holding for a period before another reduction and on and on. All depending on how my body is reacting at the time. Having started at 40 mg three years ago with two flares in the first 18 months, I am now down to 10.5 using the DSNS plan, dropping at .5 mg and often lengthening the time periods between reductions based on what I'm doing and stresses of the time.
The original idea of slowing the reduction was due to Ragnar, a Swedish gentleman who could not get below 5mg without problems. But the actual form of the DSNS was something I worked out a few years ago when I struggled to reduce without feeling awful even at higher doses. There is another similar reduction which isn't quite as slow. Both have been sent to patients by the NE of England Support Charity for some time and both have been used by a lot of patients with success. The DSNS format is being used by the Leeds Research Group under Sarah Mackie and the other format has been used by rheumatologists in Gateshead.
I do hope you have no objections to this taper being included in my application? (I think it's brilliant and it is very helpful to me personally). I have described it as "A taper created by users of the HealthUnlocked Forum. " so this probably isn't correct. Do you have preference? I have referenced it as
"PMRpro (2014) 'Dead slow and nearly stop reduction plan', forum message to PMRGCAuk HealthUnlocked Forum. Available at healthunlocked.com/pmrgcauk... (Accessed 28th March 2017).
"
Also, do you have a reference to the "not so slow" reduction plan?
No not really since I wasn't a member of the HU forum when it was being developed!!! In fact - I'm not even sure the HU forum existed, the other two forums had been around for far longer.
I am a Patient Research Partner with Sarah Mackie's group in Leeds and both the slow approaches were worked out by members of the NE of England PMRGCA charity, pretty much in parallel. If you want the other one contact sambucca in a pm with an email address.
I use this forum and have succeeded in reducing my pred for GCA via PMRpro's DSNS method. I keep a chart with black spots for new dose and red ones for old and it has worked so far. Maybe it's age mixed with caution but I definitely prefer a paper, pen and caution method to an app, I'm afraid. During my current tapering, I felt quite a few differences in mind and body which, if anything had felt really wrong, I would have adjusted the method accordingly.
First, thanks for your very interesting post and your efforts in developing an app which helps PMR / GCA sufferers to plan the steroid tapering process more effectively. Sorry for this long reply, but I hope it's constructive:
I'm 2 years into the process and, like many others, I'm sure, have grappled with the good, the bad and the ugly of recommended tapering plans from arbitrary periodic step-downs to DSNS and all of the variations in between, including Ragnar's method. Early on (before knowing about DSNS etc), I even devised my own 'Escalator' method which turns out to be an equivalent. My 'home made' method first involves plotting a monthly / periodic maximum percentage reduction (< 10% as recommended by most experts), and then calculating a differing weekly mix of daily dosages to achieve as 'smooth' a taper as is reasonably practical given standard tablet strengths and / or the limitations of pill splitting. The Escalator principle is similar in that it aims to avoid or reduce the risk of flares in symptoms that can be (but are not always) due to reducing the meds by too much and / or too quickly.
That said, and as PMRpro and other experts suggest here, even the 'best' (i.e. validated in terms of reported, reduced incidence of flares) of tapering plans is only likely to be as effective as the patient's ability to track and monitor results against it, and to adjust the plan accordingly. Also, as PMRpro and others say (and I know from experience), there are numerous other variables that can de-rail even the most rigorously planned reduction schedule: including bio-availability, comorbidities, physical and emotional 'load' / stress, and even the weather (yes, the weather!). Just to add some more randomness and uncertainty into the equation (!), it would appear that the inflammatory process with PMR / GCA runs its course (+/-) with a personality of its own, and can act independently of the other factors in the inflammatory equation. There is much anecdotal evidence of this phenomenon in the many 'confused.com' posts here on the topic of the efficacy of different steroid tapering methods!
My take on this important subject is that any tapering 'plan' will only be as effective as a patient's ability to track and correlate their response to it at any given time and in context: and to make adjustments to the trajectory of the plan accordingly. In other words, and as PMRpro and others say, the relative effectiveness of any tapering plan is very much dependent on a patient's individual context - and should be more Symptoms-led more than Plan-led. An exclusively 'plan-led' approach seems to be where many people become disappointed, frustrated or even depressed when it doesn't seem to manage the symptoms as effectively as hoped.
None of this is intended to discourage you from developing an app which, I'm sure, will be helpful to many! All I would add is that ANY tapering plan (paper / web / spread-sheet based) should include a facility to monitor (qualitatively and / or quantitatively), somehow, its effectiveness in terms of a pattern of 'Cause and Effect' on a regular basis - in order to make sense of, and have confidence it. Given the often reported, typical 'catch-up' times of several days associated with steroid reductions and / or flares, I think that a tracking / monitoring element symptoms-wise is as, or possibly even more important in the process as the planning of it, to avoid or at least minimise the Yo-yo effect.
Of course, the above is very much down to the individual. One of the paradoxes of taking a more (or over?) analytically-minded approach to steroid tapering seems to be that it can encourage unrealistic expectations of a predictable, 'successful' taper and lead to disappointment, frustration and a loss of confidence in it, given the randomness of many of the variables that can influence its efficacy. And, again, paradoxically, the potential psychological stress associated with this can, in itself, feed back into the equation symptoms-wise - so it's a Catch 22. I've been there and got the T shirt, despite my 'clever-clogs' Escalator method!
So, my conclusion? Yes, plan your taper using a respected, tried-and-tested method. Yes, use an app, spread-sheet, diary - which ever suits you best. BUT - also monitor your symptoms against it equally rigorously and regularly, and always be looking for a pattern / patterns of Cause and Effect over time. This seems to be the Missing / Weak Link with many tapering plans and, this (although with no guarantees) will at least give patients some feeling of control in / understanding of very complex process of managing and living both with PMR / GCA and the powerful drugs that treat them - even if they ultimately can't control some of the other variables in the process!
Good luck with your project Sandra - I'm sure it will be of great practical help to quite a few here, and I look forward to hearing about developments.
Nearly ten years ago when I was 69, I was diagnosed with GCA and there was one lady in Southend who ran a support group and a lady in Scotland (who started the first charity in the UK) and she supported me through the first six months and became a life long friend.
25 of us then met in London and determined, with Bhaskhar Dasgupta to set up a charity whose aims where, Support, research, etc, with support coming at the top of the list.
I have found that you need knowledge and you need to learn about what works for you. It is a strange journey and one you never expected to take and knowledge is power.
That is one of the basic principles as to why we set up the charities and support groups to learn, both from the medical profession and for ourselves.
We have taught the medical profession, in a small way, what we have found out, how we feel and what we know about ourselves.
More research is being undertaken now then ever before. Raising awareness of these two illnesses has resulted in people being diagnosed more efficiently and the 'Fast Track' for GCA is saving people's sight and another was the new PMR guidelines reducing the age range from sixties down to 50 (sometimes people below 50 are being diagnosed) and new guidelines for GCA are expected shortly and they both have had major input from patients.
PMRpro is now on OMERACT, Kate has written two books, we have produced a DVD 'You are Not Alone', a booklet ' Living with PMR & GCA' and much other useful information.
However during that time I have yet to meet anyone who has the same journey with PMR, GCA or those who have both PMR&GCA.
Human beings are highly individual and their is no 'normal' Yes we are alike - but we all have genetic differences.
Therefore you need some practice with your own disease - and you can't take it as a straight road, there will be some unexpected potholes, bends and u-turns!!!!
I hit quite a few as the light at the end of my tunnel was not a straight line and sometimes went dim..........but 5 years down that tunnel, the light switch went on and has remained on to date............I live with the knowledge that if it does return (currently no known cause or cure and not in my lifetime either I think) I know more now than I did then.
So what do I think after 10 years 'One size does not fit all'.
I am willing to talk to anyone and everyone to further the cause and would never discourage anyone who is interested in helping.
An email with your contact details sent to pmrgcafightersne@gmail.com will find me.
A huge thanks to everyone who have been contributing to this thread. You are certainly all very knowledgeable about PMR/GCA and steroid tapers which is why I subscribed to this forum in the first place.
What inspired me to design this little application is down to my experience with this condition. My Rheumatologist gave me a schedule that started with a 2.5mg taper and then when I reached 10mg the plan was to reduce by 1mg every 6 weeks. A pretty standard plan as far as I can tell from other posts. I typed my schedule up into a spreadsheet that I printed out and kept in my handbag and only looked at it every now and again to remind me on what day I should next reduce my dose. All went well until I tried reducing to 4mg and wham you guessed it I had a flare. At this point I had been discharged by the hospital so I came onto this forum to figure out what to do. The advice was to go up to the previous dose that I was OK on so I upped the dose to 5mg, then 6mg, then 7mg but was still suffering so rung the Rheumatologist for advice. Fortunately he agreed to speak to me even though I had been discharged and he said the standard advice was to go back up to 10mg and then once I felt OK to start a 1mg reduction again. The GP agreed and so this is what I did. I made some notes on my spreadsheet and re-scheduled to re-start a 1mg taper after 6 weeks. I could see that I was back on the same dose as I had been on 12 months ago so yes, I was quite despondent. However, having read about the problems of reducing at the lower doses on this forum I decided that when I reached 5mg I would try reducing to 4mg using the DSNS method. Again I reverted to my spreadsheet to work out what dose to take on each day. This was a few months ago and I successfully reduced to 4mg which is where I am staying until I decide to have a go at reducing, again using the DSNS method to 3.5mg. So at this point I don't really need a calendar to remind me that I am taking 4mg a day but I don't think it hurts to keep a record.
This application works in exactly the same way as my spreadsheet (I am good with spreadsheets!) and will only be of interest to those who prefer to use a computer rather than pen and paper. Doses can be calculated by selecting a taper BUT each days dose can be changed if necessary. You can stop a taper, start a taper, overwrite a taper - do exactly what you can do with a spreadsheet - including seeing your schedule plotted on a graph - but you won't have to bother setting one up if you don't want to - instead you could try this application.
For those of you who are not interested in technology, do you have a friend or relative who you could pursuade to try it? I have already received some really good ideas about enhancing the application but could really do with some more feedback from people who have tried it to create a schedule.
Sandra is doing this as a research project for her BSc degree. Let's get behind her and give her the participation and support she needs. Sure, it may be that for a lot of people, a paper and pencil method will be best. But isn't it a great idea to try out an app that can be made as flexible as the person using it? That's the whole idea behind this and the reason that PMRGCAuk is supporting Sandra's efforts by making her trial available on the forum and elsewhere. Don't judge in advance. The point about research projects is that there is no foregone conclusion, they are for learning, so the more people who take part the better!
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