Steroid Taper app

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.  

Ditto !!

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. 

Yes, I understand all of that Eileen and agree with you - but I still need a goal! I don’t mind if it has to be adjusted a 100 times or more, and if it takes years then so be it, I will adjust my mindset accordingly. Disempowerment is the worst thing for me and even though I have no control when my PMR burns out - I feel better when I’m doing something or heading somewhere whilst it does its thing. 😊

You have the right attitude - though whether you will still feel it in x years is another matter! Even I get down occasionally! But it is the people who build their hopes that such a taper will achieve getting off pred I'm talking about. There are plenty of them unfortunately.

I know that I’ll definitely have some down days, having a goal will help me, am certain of that! 

I agree, Elizmac, and always have a goal, but I simply, and very frequently, move the goalposts as needed.  Have in fact been able to adjust the goalposts in either direction - quite often tapering faster in early days as I was able, and then more recently much more slowly, or even not at all.  It does give me the illusion of some control.  

Absolutely! Moving goalposts is part of life? Our journey is never a straight trajectory. 😊

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.