I’ve just been reading the PMR/GCA UK December newsletter and discovered this free taper app. You can choose which taper you want to follow or set your own. Just exploring it now.
I saw all the discussion about this on the HealthUnlocked forum when the person was developing it. No use to me as I don't have a smartphone and I'm blowed if I'm starting up the computer to fiddle with it.
Do tell me how you get on with it - I'm less than convinced of course being a smartphonephobe but also because it seems to me an old-ashioned calendar and a pencil/highlighter is just as flexible if not more so. I worry about the way you see an "end-date" when you plan so far in advance - and you soon realise that reducing isn't as simple as following a plan!
My issue too...I change according to my needs, then have to adjust my handwritten calendar. Too complicated for my addled brain to have to think about adjusting something on an app.
It would be interesting to hear from people who do use this, and how it may or may not help. I like my two year, page a month pocket calendar. And always use a pencil. For the last couple of months I wouldn't have been able to use a predictive app because I never know how I will feel....
Hi Elizamc
What an excellent app. I have been off preds for almost a year now so don't need to use it, but thanks for taking time to show it. I shall keep it in mind for friend of mine....my very best wishes to you Elizamc and hope you have success if you use the app...😊
Ditto !!
How long were you on Pred?
Hi Belle1024
I was on preds for almost a year including tapering. I tapered off pred by 1mg a month ordered by my rheumatologist. One of the reasons i was determined to get off preds was because i had dreadful side effects. Also, a friend of mines mother had been on preds for PMR for 12 years, she had tapered and went up and down with doses and eventually got down to 5mg and during that time developed breast cancer and then a year later developed skin cancer on her face. I had read st that time long term pred can cause skin cancer and other certain cancers and my friends mum proved this and this spurred me on to get off them. I continued to taper 1mg a month never upped the dose if i had pain, kept going i just wanted to get off them. One year on i am doing fine although i went through withdrawals for a while and bone pain caused by the preds but weathered the storm and got through it. It can take up to 2 years for the adrenals to return to their normal function....but so far so good...my best wishes to you Belle1024....
Hi Bella1024
Just to mention my friends mum was 77 years old at the time, is still on preds and having regular checks regarding the cancer...
This is a very cheerful prospect, isn't it? We have to get adequate vitamin D because pred can affect our bone density, but we have to protect our skin from the sun because there's an elevated risk of skin cancer (fortunately not melanoma according to the studies). Pred really is a dangerous little friend!
And of course inflammation can cause cancer too, so pred helps with that. No easy answers.
Hi Anhaga
It is a very daunting prospect indeed! The lady in question was not a sun worshipper she spent most of her time indoors whatever the weather and went out occasionally with her daughter. Being the caring daughter she was, would have made sure her mum took all meds necessary to keep her bones healthly. Sores appeared on her face which wouldn't stop bleeding and she had quite a few she had to have the tumors cut out.... as you say Anhaga preds are a dangerous little friend.....friend as they do help with pain and dangerous because they are unpredictable with our health...my best wishes to you Anhaga
Hi Lilian
One of the great things about forums like these is to hear people's anecdotal experiences with PMR/GCA and how they dealt with diverse aspects of these conditions - often complicated by other illnesses and all kinds of things. However at times it can be disturbing to read the very negative responses some people have had (or attributed) to Prednisone or other drugs and treatments. This is where it is clearly invaluable for any of us to go back to the medical research and check to see what the latest peer reviewed articles (from reputable medical journals and sources) so that we don't take the database of 'one' - or even 'two' when we are considering our own situation as some kind of 'gospel'. Just saying this as sometimes I think some people may be unnecessarily worried by information which is not of the more substantive 'scientific' kind. On the other hand - as most of us obviously do - I always appreciate hearing what experiences people have had - and I have found looking back over a sequence of posts from various members over a long period it is possible to get a more developed overview of the trajectory/experience of their illness - to see how and what 'worked' in the end.
Best wishes
Can you look up a persons posts? I’ve wondered how to do that...
You can go to their profile by clicking on their name and that should show you their activity on this forum.
Quick look at the site and I see that they implemented it in a way that one has to predict how long the PMR will last. You select the taper plan based on the predicted length , say 104 weeks and then it guides you thru taper. Example for 104 weeks follows Dr. Kirwan's schedule with staying on 10mg for 1 year and then tapering 1mg/month. The issue is that below 10 or so, it is hard to go in 1mg steps...
I wish it was structured differently...
I plan mine using PC in MS Excel and track it on paper notes...
Well, Nick, that's the thing. If it's the one that was being trialed on the healthunlocked site that was my first reaction, and for me it's so much easier to use an eraser to change my potential taper than to have to fiddle with technology, because you can change your taper in the program. Moreover my pocket calendar has a record of every single dose I've actually taken, easy to see at a glance where I've been, and where I'm going can be a fluid thing, able to be changed in literally seconds.....
I haven’t looked at the one you can write yourself, but presume that you can put in whatever taper you want. I understand that the course of PMR and steroid dose is unpredictable but I fund it helpful to look at a structure like this - and think my GP will also.
Hello Eileen, one of the things I likes about this IS the end date. I realise that we all have no idea how our PMR will work out - but I like a goal too aim for! Am going to try using it though I also keep a diary note because I don’t totally trust my phone not too crash 😊
When you have been involved with the PMR forums as long as I have you will realise that having that sort of goal to aim for is sometimes not the best idea in PMR. The goal you should be aming for is the best management of all your symptoms - whether it is PMR symptoms or the side effects of the treatment.
However much a doctor may claim they "will have you off pred in x months/years" they have no control of that at all. They are doing nothing to change the disease process, the pred only manages symptoms. So the actual illness is chugging away in the background with no changes except those it has of itself as it progresses, waxing and waning for various unknown reasons.
Doctors in the English-speaking world all too often tell patients "PMR is over in 2 years" - no it isn't. It may be a case that about a quarter of patients get off pred in under 2 years - but it is likely they remain at a higher risk of a relapse later. About half take up to 4 to 6 years. The patients take their doctors at their word and set off on a tapering programme that all too often was ambitious, to say the least, expecting that they will be PMR and pred-free in 18 months, 2 years. Every taper suggestion I have seen in the medical literature has the codicil "it may be necessary to adjust the taper to the individual patient" or words to that effect. And they are mostly ignored.
A couple of years down the road patients are still on pred, have probably experienced at least one flare, often more, and are being nagged by their doctor "you must get off pred asap" - which of course has at least 2 results: the patient forces reductions and has a flare and they feel they have failed. Or their doctor decides it isn't PMR. It may not be - but you cannot decide that on the basis of it lasting more than they think it should. Nor can you say "you should be on a lower dose by now" - for several reasons. And they get upset and depressed. Especially when it has happened several times.
Then, if they haven't already done so, these patients go looking for a forum. They find us, here or on HU, and discover that, actually, they aren't the only ones who struggle to reduce their pred in line with a fixed reduction plan. That flexibility and realistic expectations lead to a far happier journey with PMR.
So while I do understand the desire for a goal to work towards - make sure you have chosen the right one. IMHO that is not a date by which you will have achieved a given dose.