I've read a couple of times that people with R/A die ... - NRAS
I've read a couple of times that people with R/A die earlier, my doctor will never answer me properly...is this true?
There's an article on the NRAS website about this - sorry can't remember the title but it's near the article about the increased risk of cardio-vascular disease.
Just about everything in life has potential risks and potential benefits - it's a matter of statistical risks so your doctor won't answer that question as there would be lots of other factors involved from a health point of view. So I wouldn't dwell on it:-} I just try to be as healthy as I can be despite having RA.
Cece x
It's also important to bear in mind that the studies done that showed the impact that RA can have on your lifespan were all done before the new drugs came along. Many of the biologics have only been around for 10 years or so, and even MTX wasn't as widely used. So it's really impossible to say what the impact will be for us. Generally it's likely to be positive as anything that reduces continual inflammation reduces the risk. I'm like CeCe, I do what I can to make sure I keep my heart healthy so take exercise & watch my blood pressure and cholesterol, and then try not to think about it. So try not to let it get to you. Polly
Statistics are funny things. Even if the "average age" of death is actually less, its all very individual and even in folk without major illness there is a huge range of ages at death, so no reason to think you will die significantly younger - especially if you do everything else you can to give yourself the best chance of being in the "better than normal" range - like healthy diet, not smoking, moderation in alcohol intake, keeping at a good weight, and exercising as much as possible.
I haven't read about RA life expectancy, but I do know that with Ankylosing spondylitis, the life expectancy isn't significantly less, but there is more of an impact on working life - with folk with AS on average stopping work several years earlier than folk without. But again, those stats have come from the pre-anti-tnf days and that will have a lot of impact on reducing disability now.
I did hear a story once from a man who had a nasty aggressive cancer and as folk do, asked his doctor what the average life span with it was, only to be told "about 6 months". After doing some research he discovered that while this was the average, the range was anything from a week or so right through to a few cases of more than 20 years. That made him decide firmly that he was not going to settle for average and he would do everything he could to end up in the upper end of the range. We can all do that kind of thinking and acting if we want to, but when it comes down to it, there is no way of knowing how long any of us are going to live.
I do all I can and I'm not dwelling on it, it was just that a friend said she.ll outlive me due to R/A...she had had a few drinks so didn't mean it unkindly...as you rightly say life is a risk and one that at times I like to push...I really should stop smoking...I smoke about 5 a day and it is silly as I've given up drinking . I think I am in this frame of mind because I've been taken off everything as body not coping and I've got blisters and keep vomiting so I've just felt a little vulnerable, I'm not normally behave as silly as this and you are both right, I must just get on with it...thank you for your reply. Maryx
I think that it's completely understandable that you feel like this just now - It's very difficult when you're off all meds and in pain and therefore feeling low. At the very least that was insensitive of your friend, it sounds rather like she's a bit jealous of you for some reason?
Once you're settled on a new drug regime do try to cut out the cigarettes all together, there's a lot of nhs support for smoking cessation and it's the biggest thing that you could do to improve your overall health:-} Two of my brothers used hypnosis to stop smoking and the 3rd brother used acupuncture - so there are quite a few options out there.
All the information that comes your way in the first 5 years or so after diagnosis can be quite overwhelming, so be kind to yourself and try to take life a day at a time when the going is tough:-}
Cece x
Thank you for your lovely reply. My friend didn't mean it really, even my own mum who is 81 says she.ll outlive me, I think it's just her way and you are right I must stop smoking I can go days without one then just fancy one which starts me off. I don't eat meat and I'm very careful what I eat (not all the time!!!) and I don't drink, (only on Christmas Day and birthdays) so it seems absolutely stupid to smoke especially as I'm always out of breath...waiting for a base-line chest X-rbecause of breathlessness and constant niggling cough. I am normally a very upbeat person, I've just started my Eng Lit degree so am quite positive. - don't know what's happened to me I just feel so mentally low with no motivation....as they say in my favourite film "Local Hero". ..........."You'll just have to buck up!" And I will I'm sure and thank you again for reply. Take care. Mary x
Hi Mary
I've come to the conclusion that life is a lottery so don't beat myself up about things inc lifestyle anymore. I stopped smoking 7 years ago, I stopped because I wanted to, not because I thought I ought to or was told to, and think that's why I've not gone back to them
Since then I've had cancer and now RA. I'Ve been prudent al my life, planned ahead and strived to be self reliant and comfortable in old age. None of that seems important without good health but we can't guarantee much in life I believe. So try not to dwell on it and live for now, doing what fulfils you and, if all else fails, you know there's always Eddie to lift our spirits!!
Ronnie xx
Thank you Ronnie for reply...you know I'm not really like this normally I see beauty everywhere, especially birdsong it fills my heart. I'm just feeling sorry for myself lately...it will pass I know..especially on Sat when I get my morphine!!!! I know I shouldn't feel like this but it's my saviour it gives me a couple of days feeling reasonably normal. I'm sorry to hear you had cancer..ten years ago I had cervical cancer and I was lucky it was caught just in time. I haven't always been sensible in my life so I wonder if I didn't help myself...my humour is a great help...like you said take each day as it comes. I wish you well and please keep in contact. Mary x
Yeah It is probably true but we are all going to snuff it for some reason for the other anyway. Your friend sounds like an idiot may be the drink will get her. Just eat as healthily as you can quit the smokes and exercise as much as you can (well as much as you are able) Take care x
Thank you Kittykat for your reply and you are so right! I'm just feeling sorry for myself at the moment...I can't seem to stop this horrendous sweating..I'm drenched and it's constant. All this feeling will pass I'm sure...i.ll watch a bit of Eddie Izzard tomorrow he always my heart beat a little faster. Thank you again and I. Def going to quit the nasty smelly habit. Take care.Mary x
Smoking is more likely to reduce your life expectancy I'd have thought - hope that's an incentive. My mother had RA from the 1950s and she was a never well kind of person, with asthma as well. She lived til she was about 90. And in reasonable health until just before the end. My father lived til 101 and quite honestly I wouldnt want to, myself. He was deaf, couldnt see and had difficulties with his teeth so that he lost the pleasure of eating. I think as long as we try to live in a healthy way - I tell myself always I need more exercise - we should keep going for as long as is reasonable.
Sorry to hear about the sweating - is it to do with the meds or time of life or something?
Hope you feel a bit better soon
C
Hi there and to say "be positive", "It is only you that can help yourself", are the two sentences I have had meted out to me by so called well meaning people. I hate them.
What I feel is to enjoy as far as you can life. Look forward to something each day even if it is only a cup of cocoa and a biscuit. A walk to the shop or to watch a favourite programme on TV. My saving grace is Classic FM and Tai chi, but we can all find something. A flower that blooms. Keep a little diary of these good things. OK It works for me and might not for you. Its all I can offer you. Sending hugs and prayers or thoughts. [whichever you prefer]
Thank you for your reply. I agree with the "be positive" really annoys me...I think they are only trying to help but a lot is said without thinking. I do have so many things to be happy about...I have 6 scrumptious grandchildren and no 7 on the way, a little girl who I'd going to be called Ruby. I love bird song it fills me with such joy and when out meeting a happy dog who will greet me with lots of wags....so there is a great deal I should be grateful for and I am...I think a lot has to do with my mental motivation I seem to have lost it also I was having fits so can't drive anymore and I loved driving. I think I've just got to "buck up". But as you know the fatigue is terrible. I'm going to study hard and see if my brain (or Brian as we call it) still works!!!!! They have said that my R/A is very active at present so coming off the meds was something I didn't want ...I'm not normally so rudebut I was covered in blisters and vomiting that has stopped so I'm hoping they will find something else to try me on...I'm sorry I've gone on aand on haven't i,? Without asking how you are I'm not normally so rude but when I see my friends working and getting on with their lives there are times when I feel very fed up..I fact you could say Trulyfedup! But it will pass. Thank you so much for reminding me of the things that do give me pleasure. Maryx
wish I could speak to you personally. I find I am not so fatigued just what I call frustration. I have no painkillers and said this so many times others must be fed up with me. Allergies and intolerances. So feel as though I were tied up with string.
Oh honey...it is awful isn't it. Today I've got the flu feeling but I'm off all meds as side effects were horrendous. I had been on MTX and infliximub quite a while but I have a wonderful GP who gives me morphine now and then as pain is evil..I'm also on tramadol..have you asked for pain relief? What meds are you on? Pain relief is so important also I am on zoplicon 7.25 one at night that helps too. The frustration at not being able to do the things we used to is horrible. I used to ride horses...my God I might be able to get on with help but no way could I get off...that's assuming I stay on anyway!!!! You can talk to me anytime about anything and it doesn't matter if you repeat yourself (I've done it lots) but this site has really helped me so it feels good to be able to listen to others. Maryx
I have no medication and have RA and OA. But I tried to help someone else on this site and was told I should not have done so. I did notice you mentioned study and wondered what you were studying?
Oh dear...why were you told you should not have helped them? That probably hurt. I'm starting an Eng Lit degree I started years ago but had a kind of mental hiatus so stopped and now my children are grown and married and I'm on my own I thought I.d start it again...I'm studying with the OU ... I'm terrified I don't have it in me anymore but I guess if I work hard at it!!! It will also make me feel proud of myself again...please don't be worried about talking to me. Mary x
I was told I was advertising as I had a cure for shingles. Anyway it put me off helping. English I passed my O level on the 29th attempt and got a G in the morning and a B in the evening on the same day in 1969. So I know you must have better English than me. Great you are studying for as I do it [and I write courses] it keeps my mind off the pain. I also teach tai chi and it is really that and a massage each week - yes looking forward to it right now - that keeps me going.
I'm probably no better than you honey I just have such a passion for it which helps that's all. Someone suggested to me that o try tai chi I might look into it. I'm sitting here absolutely soaking wet it's just running in my eyes...I hate it. I think it's when R/A is active as I've been through all those womanly things...I hope but this is Ridiculous, do stay in contact. Mary x
Hi Mary and I am Glennis, tai chi is wonderful and really a painkiller. Though to be fair takes time to get into it as the brain has to learn the exercises or forms as they are called and then to let the body do them. It is said to be a meditation as well as one gradually forgets what anyone else is doing and so the whole body is at rest. When you find somewhere make sure they understand that you are disabled and if it hurts then modify what you are doing. For example if you cannot do a large circle make it small. To get you started just sit and raise your arms when you breath in and lower when you breath out. Just for say 10 times. It does make you calmer. If 10 is too much then make it five. When you start any exercise regime just ask the GP or rheumy if it is OK for you to do so. They can then log this in cases the info is needed anytime.
Thank you very much Glennis (nice to have a name) I'm going to do tonight those breathing exercises anything that can help me to find some calm..I did go to yoga with a friend but found it too harsh on my joints...my GP has always said to me try and find something that may give you a calm peace now and then so thank you, I am def going to start...it will also give me something to do and if it benefits then that's great..thank you very much Glennis...I will definitely try this...I've got a couple of people who speak highly of it but as I said I've lost mental motivation but I. Feeling a lot better today mentally so will start. I will let you know..Mary x
When you say sit am in what position shall I be? Is it ok to do that breathing whilst sitting on my bed? Mary x
yes fine on a bed or anywhere but don't slump more than you have to cos of pain. Good luck and let me know how you get on.
I did it Glennis...I did it twice. I'm going to keep doing it and get longer at it..so thank you for your help...most appreciated. I hope you are faring ok today. Maryx
Great and when fed up with this one will give you another one to try.
Just to throw a spanner into the works... 4 years ago I was happy and outwardly healthy. However, I did smoke, I was overweight and was a bit too fond of the white wine. I decided to give up the fags and booze and lose weight. Within weeks, my fingers and toes had started to hurt, and within months I'd been diagnosed with RA. Probably a complete coincidence, but I sometimes wonder if it was the sudden shock to my system of giving everything up that sent my immune system doolally. Five cigarettes a day is probably a lot safer than such things as motorway driving and the stress of giving up is going to be detrimental too. Don't be too hard on yourself. As Skeggy said, we need small pleasures to get us through each day.
Food for thought there!!!!
I decided that I needed to loose weight so joined Weight watchers and the gym and lost 3 stone but hurt my finger in the gym went to doctors and wham bam RA! So I decided that trying to get healthy is all its cracked up to be...I now have put all the weight back on and actually miss the gym but the last time I went on a tread mill only walking for 20 mins I was in pain for 3 days.
Oh no!!! I went on my mums exercise bike...I was showing off saying I would do half an hour...I did 4 mins before knees locked..how funny is that..teach me to show off!! I asked my doc if I could join a gym he said the best exercise would be to walk gently as gym to harsh...now walking is a problem...perhaps I should go back on mums' bike!!!!! This R/A really is a bugger isn't it? Maryx
HK, you and I were the exact same except that I was diagnosed just three years ago. I stopped drinking, I didn't smoke, I went to weight watchers and I walked the dog everyday. I was loosing weight so fast that my councilor took me aside and asked me if I was sticking to the programme. I suddenly lost my normally very healthy appetite. I started with a pain in my left thumb and my right elbow, not a problem I though, your getting older and these things will happen.....but then I started to notice that I was loosing strength in my hands and that worried me. So off I went to the doc and he sent me to rheumatology and without as much as a blood test the rheumy told mei had Rheumatoid Arthritis! My story after that is much like a lot of people on here. Like you have have thought that I put my body I to some sort of shock.....but when I'm being realistic I know it was really just a coinsodince. Just the luck of the draw.....all the best.
Thank you and you are right it's just the luck of the draw...there are people out there who are far worse than I. I think I just find it difficult to adjust to the fact that I will never be the Mary I was but it's about time I just gone with it!!!!!! Maryx
Interesting. I suppose we can take solace in the fact that we've lost weight and our liver function's going to be improved!
I like it!!!!!! My liver function is excellent! Blimey, what has it come to when I'm talking about my liver function! I must get out more. Mary x
Hi
How can anyone say how long they are going to live, there are so many variables, health, environment, lifestyle, and things we can't change.
My mum had RA for nearly 50 years. She died not from RA but from complications from it. Her medical care was a disgrace, (one of the hospitals under investigation), so it would be difficult to say how she may have been. She had CKD and kyphoscoliosis but she died from the dreaded C-Diff after being admitted to hospital with a chest infection.
She was 77 and although in constant pain tried to be as cheerful as she could be.
Life is what you make it, none of us will be around for ever.
I know you are right I was just feeling sorry for myself...I have a twin sister who is mentally and physically disabled and is on borrowed time so you'd think I.d know better...normally I do but I think it was being taken off all meds due to vomiting and blisters that made me a little low...it's passing now...maryx
Hi Trulyfedup, I think this might be the article that Cece has mentioned on our website nras.org.uk/about_rheumatoi...
As the article and others here have mentioned, previous studies on this are no longer dwelled upon due to the improvements in RA diagnosis and treatments, and of course a healthy lifestyle plays a huge part. If you are worried or ever want to ask anything, just give our Helpline number a call on 0800 298 7650 and we will try our best to help.
Best wishes, Ruth
Thank you Glennis I really appreciate your concern and willingness to help. Mary x
