interpreting NICE guidance for psa

polly123

Hi guys,
I've been reading the nice guidance for psoriatic arthritis and don't understand this sentence, can someone explain the mortality part to me?
"people with psa have a 60% higher risk of mortality than the general population, and their life expectancy is estimated to be approx. 3 years shorter"

Thanks, Polly

dreamdaisy

I've never read this (I have PsA) but I guess it's telling us that our risk of dying before we 'should' is increased. Quite why they think it should be I don't know, might it be linked to the long-term use of the newer, stronger meds? My view is that death is a major side effect of life, and it's a side effect that affects everyone be they arthritic or not. DD

polly123

Hi DD, thanks for your response - as a statement it just didn't make sense!
I had asked my rheumy nurse and she's come back to say that the three years less life expectancy is around med use etc, which we know, and which is considerably better than compared with non-use of meds where needed, and is in line with any chronic illness.

The 60% mortality rate over general population is apparently due to the increases risk of cardio diseases, diabetes etc, due to affects of living with arthritis. I guess for those diagnosed early and treated aggressively then this can be significantly impacted by positive actions, which as we all know should be easier to do if more well.

I've been thinking about this a lot lately, reading research that meets Cochrane guidelines and trying to make some big life decisions around how I see the next (possibly/probably last) two decades of my life.

Heavy stuff!!!!!

Thanks for listening, I'm going to travel down and have a long conversation with OT and my nurse about this after easter. Be nice to have someone in real life who i can talk about this stuff with, my partner is great but like many prefers not to think about it.

dreamdaisy

I've thought about it long and hard and, quite frankly, there are times (like the past few days and today) where an early death is very attractive. Our wills are made and funeral wishes are known. Mr DD will not talk about it but I guess with my living at the sharper end of life (where every activity requires a strange mixture of discipline, effort and compromise) I am more able to accept it. I note that I was the first to attempt a reply - I suspect that many people cannot deal with such thoughts, and understandably so. DD

polly123

Hi DD, yes my life is running on similar lines, and i'm fortunate that i'm an optimist and have faced similar challenges over my life to be fairly stoical about things by and large. I did think long and hard before posting as i appreciate forums such as this attract vulnerable people looking for answers, alongside those forum members here for peer support, and i didn't wish to come across as alarmist, however i really wanted to have this conversation, as although my life has narrowed considerably (which also brings its own blessings) i think i'm looking at major change now since i've made all the "smaller" changes i can identify.

I appreciate your responding, and please don't feel you need to continue to do so if you aren't in a good place to do so.

Warmest regards, Polly

theresak

My GP actually talked to me about this reduced life expectancy, in the nicest possible terms. It was put down to a combination of meds, a compromised immune system, and the fact that the RA is systemic, and thus can attack any part of the body. Together with age - I'm 64 - my risk factor increases over the years. I drink the occasional glass of wine, a malt whisky once in a blue moon, a G & T occasionally in the summer. I try to eat reasonably healthily, exercise when I can, mainly swimming, as that's less painful, and I`'ve never smoked.

I don't dwell on the fact that I may die 'before my time,' as there is nothing I can do about it - it's in the lap of the gods, or in my case, God.

It's a good excuse not to put things off,eg see a place you've always fancied visiting but never got around to it.

polly123

Thanks, yes i'm seeing it as an opportunity to make some big decisions about how i spend the time I have left, prompted partly by age and partly by illness. I'm almost 55, work part-time at a job i enjoy but am finding more and more tiring (and i talk for a living :-) , and am in that cohort of women for whom retirement has been pushed back to 67.

However, i'm also financially self supporting so thats another consideration. I'm wanting to feel more in control, and if possible make decisions myself before my psa forces things even more. Trying to get a feel for a realistic expectation, hence my wondering on the meaning of the NICE wording.

I'm not dwelling on it in any particularly destructive way, just trying to get an optimistic but realistic picture in my continued efforts to come to terms with things.

dreamdaisy

I think it's a valid consideration - it is something which will eventually come to all of us (maybe it's just as well that we don't know when, I am going out tonight and cheerfully assuming I will come home complete with Spouse) but, given our circumstances with the gloriously awful combination of disease and meds, it is perhaps of more relevance and therefore requires some thought and planning. I have never seen the point in taking an ostrich approach to anything: if you don't confront your worries they can end up being hugely out of proportion.

Our first act as a married couple was to make our wills: we have no children so we accepted that we had to state what we wanted doing with what because if you don't it can all end up with the government: I think not. I am now 56 and my life bears no relation to what I thought would be happening with me in my late 50s. De nada, I cannot change things and have to make the best of it. I may have another fifteen or so years to go, I cannot say that I am looking forward to them but life is what you make it and I intend to make what's left of mine as good as possible. DD

polly123

Hi DD, yes my mantra for the first half century was always "so long as i've got my health" and its seen me survive divorce, 13 house moves, poverty and two of three children with serious sero-negative disease (would that i have known that's what it was 20 years ago), as well as many more minor things.

My life is nothing like i expected, and nothing like most people's i know in their 50's, but there you go. I just want to make the best of what i have and try and be ok with that.

Enjoy your evening, Polly

dreamdaisy

Well, we both came safely home so that's a result. I've never enjoyed good health, not in the way that I gather others have it, so this is just more of the same as far as I'm concerned. I admit I was not expecting arthritis, I was anticipating diabetes thanks to the long-term use of inhaled steroids for my asthma (the docs told me this would be the case). Interesting fact alert: unlike arthritis everyone expected the Spanish Inquisition because they had to give thirty days' notice.

I am the only one in my group of friends who has to contend with this nonsense, and I have to bite my tongue sometimes when they witter on about the injustices of the odd twinge when they've run a half marathon, played footy or hockey. What they cannot grasp is the fact that their ageing bodies are protesting about the stresses they are placing on them because they always have. I suspect I shall have the last laugh. 8)

It is down to us to make the most of what we have so you go, girl, your attitude is a good one and that is a positive. DD

polly123

Good morning DD, happy to hear you both got home safe
My son has been ill all his life and has a fantastic attitude to his illness, so i have a great role model. I'm even more in awe these days since i've been fortunate to maintain good health for many a year - he often says he doesn't know any different so hasn't lost anything.

I'm feeling much better today for being listened to and spoken to about this so wanted to thank you - i know its a difficult subject but i appreciate your giving of your time. I always feel better when visiting these forums and should do more often, but never feel i have much to contribute.

Enjoy your easter choc, Polly

dreamdaisy

It was a thought-provoking topic, in this case we're all on the same road heading towards the same destination, it cannot be avoided so why not talk it through? My favourite British TV advert of all times was banned on grounds of bad taste (i.e. reality was being confronted). It was for one of the electronic games companies; in a silent thirty seconds or so a person hurtled through their various life stages then plunged into a coffin, the lid slammed shut and you saw a grave. 'Life is short - play more games' was the strap line and so very true.

I agree with your son, you cannot miss what you've never had but, for me, this disease is a kick in the teeth as what little I used to have has very nearly gone with little to replace it. I can, however, cope which is a darn sight more than friends who have temporary health interruptions and get all grumpy because 'I don't do ill.' Breaking news, Sunshine, neither do I but you will get better in time. It's hard to encourage those who are spoiled with good health and react like tantrumming toddlers.

I hope you enjoy your Easter, I plan to enjoy mine! Take care. DD

stickywicket

Hello Polly I apologise for being a latecomer to this thread. I saw it previously and intended to reply but, having taken a decision to make the most of my remaining years I'm currently at my son's in California.

I confess the first bit of the statement puzzled me as I always thought mortality rates were 100% for all of us Maybe NICE could share their insider knowledge?

Seriously, I've had RA for over 50 years and always assumed my life expectancy would be shorter both because of that and because of all the pharmaceuticals and x-rays amd other medical procedures it has necessitated. One reason why I've always aimed for as few pain meds as possible. My body is rubbish but I'll hang on to what brain cells I can. My aim was always to raise my sons. I've done that so all is bonus now and I shall make the most of it.

Realistically, as both sons have asked us to move near them we shall probably head for Scotland. California is wonderful but a car is essential. We are both happy where we are but anno domini must be faced and neither could afford to stay without the other. So we shall concentrate on the good aspects of moving and forget the rest. Regrets just debilitate and I've enough of that already

polly123

Hi sticky nice to hear from you. Its beautiful up here in scotland today - spring has sprung!

I really appreciate all your support, and DD thank you particularly for giving of your time over the hols. I'm feeling much more myself again and counting my blessings, have also made physio and OT appointments for May to see if they can assist again.

Enjoy the sun, Polly