Can anyone tell me what the mortality rate for RA is? Sorry I know its a bit grim to ask, but I want to know.
I came across a study which shocked me this week. It sais that the mortality rates had not gone up since the 60`s. It also said that just under 3o% of pople had died 10 years after diagnosis. It seemed to link this to the severity oif the disease and possible cardiovascular problems?
I am just learning at the moment and want to understand fully whats happened to me so I can decide how I want to try to approach life in the future.
Sorry if it is depressing to bring it up but i thought maybe more experienced ( patient experts? may have got some evidence base for this question or no where i could find out the answer.
MortalityEstimates of the life-shortening effect of RA vary; most sources cite a lifespan reduction of 5 to 10 years. According to the UK's National Rheumatoid Arthritis Society, "Young age at onset, long disease duration, the concurrent presence of other health problems (called co-morbidity), and characteristics of severe RA—such as poor functional ability or overall health status, a lot of joint damage on x-rays, the need for hospitalisation or involvement of organs other than the joints—have been shown to associate with higher mortality".[56] Positive responses to treatment may indicate a better prognosis. A 2005 study by the Mayo Clinic noted that RA sufferers suffer a doubled risk of heart disease,[57] independent of other risk factors such as diabetes, alcohol abuse, and elevated cholesterol, blood pressure and body mass index. The mechanism by which RA causes this increased risk remains unknown; the presence of chronic inflammation has been proposed as a contributing factor.[58]
After being diagnosed with RA and inbetween appointments I read up about RA as I was running into it all blind...I'd read it could affect your insides and was so worried (feeling like death you're bound to be) that I asked my Rheumatologist if I'd be ok, that I'd not go and have a heart attack when I got home! He chuckled at me and told me not to worry but it is a worry, especially with a young family! Many other factors would have to play a part though and I'm hoping that they'd be able to spot problems before they really start using all the blood tests and assesments that they do each visit.
This link is from NRAS website - I don't trust wikipedia! (Sorry Andy)
RA isn’t fatal – that is it doesn’t, of itself, kill you.
However the evidence suggests that people with RA, on average die between 5 and 10 years earlier than they would have done if they did not have RA.
You might ask, how can they possibly know that? It goes like this - researchers compare a group of people with RA, and an otherwise similar group of people who don’t have RA. They have found that the group of people with RA, on average die sooner (at a younger age). It is not so much the RA in itself that causes earlier death, but diseases/conditions that go along with RA (this is called co-morbidity).
An incredibly small number of people develop serious complications involving the heart, lungs and blood vessels that result in death at a comparatively young age. This tends to bring the average age of death down quite a lot.
More generally, people with RA are somewhat more likely to have heart attacks and strokes than people who don’t have RA.
Another problem for people who have RA is that they often take drugs that increase the risk of heart attack etc – for example, most anti-inflammatories increase the risk of heart attack. Some the other drugs we take are quite poisonous and may stop our kidneys and liver working effectively, particularly towards then end of our lives.
That's the bad news. But is important to recognize a number of things –
1) the apparent shortening of life is statistical – some people may die very early some, some may even live longer than they would have done without RA
2) Keeping active and eating well can improve the health of your heart and blood vessels
3) My Nurse Consultant advises only taking anti-inflammatories when you definitely need them (and not just out of habit)
4) These studies were inevitably done at least a few years ago – things are probably improving – treatment is better now, reducing on average the length of time people have active, severe disease (and how severe your RA is, and how long it has been severe makes a difference)
5) Worrying about this won’t help! – not least because worry seems to make heart and blood vessel conditions worse
6) The use of cholesterol lowering drugs may well help – I am on a trial which is testing this idea
7) There is a lot of research going on into the problem of co-morbidity (diseases that go along with RA) – I’m also on a trial about this
I hope this neither sounds too dire; nor too optimistic about how things are changing.
Certainly, it seems to be well worth doing what you can to lead as healthy and active a life as your RA will allow.
I am now within 10 years of my allotted span of “three score years and ten” – however I stay as active as I can, and aside from a minor over-indulgence in cake, I eat well, so I am expecting to reach a century without too much difficulty.
you and I have just about said the same thing. I'm going to email the lady that is preparing the booklet to see if she will add some advise on to the blog, if not then I'm sure NRAS will be more than happy. Get out into the sunshine and get those joints all warmed up, we may suffer tomorrow but it will be worth it. I've just realised I must be the same ageas you well my Dad's 87 and he still dances 3 times a week, gardens and model makes he is fit and healthy and I intend living as long as him if not older.
Its not an "incredibly small number of people" that get serious RA complications. Matter of fact heart disease and lung disease (Intersticial lung disease aka RA-Lung) are the number 1 and number 2 killer of people with RA, respectively. Also, not every body can take anti-inflamatories "as needed" (prednisone). Those are the lucky ones. I have RA Lung, have been told I have 3 to 4 years to live depending on how quickly I progress, and I am prednisone dependant. I can never stop taking the steroids. No, not every RA patient will end up with this, but from the research I've done, more people than we'd like to admit, do. RA-Lung is more prevalent in male RA patients, and it doesn't matter if you smoked or not, it doesn't descriminate. Living a healthy life, eating clean food, and "doing all the right things" didn't stop my RA from moving into my organs (Lungs, heart, and now the eyes. I'm told the liver is probably next, if I live that long.). That's one of the crazy things about RA, its different in every patient, and can change over time in each patient. What works for some, will not work for others. Some are able to well manage their RA with diet, there are others that respond to nothing, not even the DMARDS and meds we need to live and move and function (visit rawarrior.com and meet Kelly, an RA-Non-Responder). And technically speaking, RA is NOT another form of arthritis. It is an autoimmune disease wherein just ONE symptom is swelling in the joints. One of many symptoms. Now that the RA is in my organs, it doesn't even bother my joints anymore, its as if I've gone into remission in the joints. I don't even have morning stiffness anymore. Its all about the organs. And it never bothered my hands at all. As one person put it to me, once RA reaches the organs......game over. I hope you continue to live well, and this dreadful disease doesn't move to your organs. Be well!
This is an old thread so maybe there are more accurate stats now than when this was started. This is a reliable one if it helps rheumatology.org.uk/patient...
I hope each day holds more promise for you. Take care.
Boom . . . nailed it 🙃🔨 . . 'the tipping point'. . .
The point of no return?? 🤔
We look it squarely in the eye 👁 , unflinchingly. 🙏
Hearts 💓 with you, luv. Hearts with you. 💕 💗 😌
🙏
.
_____
There's a wonderful woman, orchidcass77 ( healthunlocked.com/user/orc... ), who has a Facebook group on Interstitial Lung Disease (ILD), RA, autoimmunity:
My aunty(age 70) was diagnosed withRA and ILD and RA factor > 300 and all other f factors that could be dangerous. She was on medication for three months and was doing great. she stopped medication for four days and had an heart attack and stent was placed. For two months after that she had some complication or other.for first 10 days after MI she couldn't eat due to sores in mouth (Mistake of pharmacist who gave 20 mg instead of 10mg tabs prednisolone) so she was taking double dose daily which i didn't notice as print was very small. bcuz of that she had Na/K imbalance (hypo/hyperkylaemia whatever) and had syncope and I thought she died that day almost.She was hospitalised and once discharged she had E.coli infection. bcuz of that doctors stopped all medication except bloodthinners.after 20days we started RA medication again and some heart related medicines . She wa s doing great for about 15 days and one morning she woke up with severe head ache and by the time I took her to emergency (20 minutes )she had heart failure and was on ventilator for six days and declared severe brain insult and dead. All this happened in six months flat. RA can kill in many ways rather than one
All the time her RA specialist was more concerned she would get cancer (bcuz she had some conspicuous lymph nodules in chest and also had ILD ).He didn't even get her ECG or 2d done as she never complained of chest pain. She had constipation problem. Only recently I learned from a cardio that in woman long term constipation could be a heart problem symptom rather than chest pain. It has been moret han a year now. I was the one responsible for her. I still feel it is my ignorance and lack of proper understanding of RA that has killed her.I can never forgive myself.
Please don't blame yourself. These things can happen fast with or without RA. We have come to expect that medical problems can be solved and cured, but sometimes they just can't. 2 people out of every 100 seventy years old will die over the course of a year. Sadly your aunty was one of them.
I agree with helixhelix - RA can change literally in a moment. Don't blame yourself, even doctors grope around in the dark with this disease. Don't blame your self, you were there for her, and you did the best you could with what you knew. She not hurting any more, let that be your comfort. **big hugs**
Would really be interested in statistics about comorbidity. When statistics given about the mortality in RA are the diseases caused by the meds that kill people not taken as part of the statistics, or are they included?
There is a booklet called heart Disease in RA. this is only in its early stages and there is a trial called Trace RA. this is looking at how a statin drug may benefit someone with RA. I'm going to give you a piece from this booklet.
A person with RA may have more risk factors ie don't exercise put on weight, so may get high BP. some anti- inflamitory tablets may also contribute to High BP Prolonged or high doses of steroids may also cause diabetes.
RA it self also makes people more likely to develop heart disease. RA is due to excessive inflammation and this causes painful swollen joints, This inflamation however does not just affect the joints but also affects blood vessels lowers the amount of good cholesterol and makes the blood more prone to clot. These reasons are why people with RA may be more prone to heart disease.
As I say this booklet was sent to me when I agreed to go on the trial, so I take a pill (another one)nightly which may or may not be a statin. if you are worried I would ask to have your cholesterol tested and also glucose and blood pressure when you are at your GP's next. my personal view is eat as healthily as you can, try to do a little exercise, and be positive.
triciax
Hello Sparkle. Not a bit grim, it's reality. Something most people want to know about. I think the comments above are all so brilliant and goes to show the more we know about the disease, the treatment and effects, the longer we shall probably go on living.
Take care Julie x
Thankyou everyone you are all fabulous !!!!!!!!! xxx ( who needs a consultant ! we have NRAS !!!!! )
I've spoken to the office at the Trial place and asked if she would write a piece for us. when this blog was started I'm sure I saw that they would welcome comments from Drs and healthworkers, as well as old RA lot.
I'm emailing her the link. fingers crossed if not too painful.
Best wishes
Tricia
well you are all! brilliant,!! off sick health worker here..., am worried bout heart attact. stroke risk it is a statistical prob ,,my mum has arthrtitis but is 69 and has a dodgy heart valve which is being monitiored, I picked this up as she had persisitant cought at night no not asthma!! ,and told her to go to gp, she has yearly monitoring, but she eats healthy, weighy less than her fat steroid daughter(me!) and does tai chi and short walks when knees allow!!, my dad who has arthritis in spine (as do I) IS ALSO 69!.he has had a mini stroke , no lasting symptoms , but is on warfarin but did smoke and is v over weight, had GIVEN up smoking...., I believe may have started again....!!!, he cant exercise can only walk short distances cos of his back pain, I think we have to do the best can in terms of diet and exercise and look after our selves
alison xxx
One of the key things in this debate is that much of the research was done BEFORE the advent of today's fantastic drugs (whatever you make thing of them they do the job!). Anyone diagnosed in the last ten years or so has a very good prognosis and the chance of reduced life expectancy due to RA and associated problems is small. Those of us diagnosed earlier may still have some reduced life expectancy due to poor treatment options at the outset.
Live for now, forget the disease as much as you are able .... tomorrow you might get run over by a bus!! There's nowt you can do, enjoy what you have and stop worrying guys!
Great piece Tone, all very relevant comments, thanks for the input
Lyn x
• in reply to
Not much hope for us then Lyn! lol!
But like you say,live for today no point in worrying who knows what tomorrow will bring.
mand xx
Hi Tricia
I hope that the invitation from the trial lot is accepted. I personally like to gather info from a variety of perspectives before I make my mind up.
I found the wikipedia/Andys comments thought provoking. Thankyou to both and also for the leads re trials etc. So Im glad I raised this. What is noticeable to me from our replies is the different psychological responses/strategies to RA. I wonder if this links to on how long people have been managing the condition. Im sure there is no right way to cope though as Im a great believer in the fact we are all individuals and go through our own process of adaption to unwanted changes in life.
I do genuinely feel a bit more of the seize the day mentality now, which is no bad thing as it might release from sweating the small stuff so much!?
I also dont mind going through some negative painful emotions if it is part of me coming to terms with something and developing effective coping strategies.
Hi, I think we all have these fears and have read up on the 5/10 years life expectancy, but as said just statistical!
I have to say my Rheumatologist put me on chole med as I have famial high LDL. Cholestral 4.8 but almost 3 of that the bad stuff (LDL), she not taking chances - had checked recently & LDL now 2,
God, I think I'm becoming an armchair doctor! Probably someone reading this is saying 'thats rubbish' Oh well thats my understanding.
hey sprarkle going to take up sky diving and bungee jumping... If diagnosed at 44/45 gives me only ten years doent need to worry bout my pension , wont get to 60!!, come one weres the round the world ticket.. god this is so morbid.. plaease can we only have cheerful blogs.... were is that tall building... have a really upset newbie member contact me re the mortalitiy blog....
Well, perhaps 'really upset newbie member' should have read what I wrote very carefully!
"One of the key things in this debate is that much of the research was done BEFORE the advent of today's fantastic drugs (whatever you make thing of them they do the job!). Anyone diagnosed in the last ten years or so has a very good prognosis and the chance of reduced life expectancy due to RA and associated problems is small."
The article on the NRAS website about this subject was written in 2001 ... things have moved forward dramatically, the future's bright ... the future's er ...orange?!
Life with RA is a rollercoaster and whilst I try to remain cheerful, much for the benefit of those around me, sometimes the grim and morbid is a part of that life and issues such as this will be raised from time to time. Fact of RA life.
If anyone has issues I'm happy to discuss through personal message.
It is 30% of people with RD are considered severe. As you state quite accurately, it is not a small number. In fact so many deaths are not attributed to RD but to "comorbidities".
Autoimmune diseases affect everyone in unique ways. We all respond to drugs in unique ways. Some have emmediate and lasting remission with Methotrexate. Test your Rheumatologist to make the right decisions until you feel well informed on all treatment options. Best of luck with treatment.
I was told if you get treated on the first onset of RA with meds you have a better chance meaning joints possibly won't be as deformed as if were left years.
I was frightened in the beginning that I would die, was reassured that RA wouldn't kill me.
I Must admit there's been times where I've been scared!
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