Mortality and Rheumatoid Arthritis
Is it the best time to live with Rheumatoid Arthritis pt 2: quantity of life?
This is the second post in a series which addresses the question, “Is this the best time in history to have Rheumatoid Arthritis?” Yesterday, we looked at “quality” of life. Today we look at “quantity” of life, or longevity.
This might be depressing, so, I’ll try to make it brief. I have read some pretty ugly statistics about RA lately. And some of them are about life expectancy.
What is a mortality gap?
“Excess mortality” is consistently associated with Rheumatoid Arthritis. Some research shows that the mortality risk for RA-ers is about 38% greater than for the general population. It was even worse for women who have a 55% increased risk compared to women without Rheumatoid Arthritis. And no miracles of modern medicine have changed that.
In fact, when compared with the general population, the mortality gap has actually been widening. That’s right. Rheumatoid Arthritis patients are not experiencing the same improvements in survival rates as their peers without RA.
Mayo Clinic doctor Sherine E. Gabriel said this: “In fact, RA subjects did not even experience the same improvements in survival as their peers without arthritis, resulting in a worsening of the relative mortality in more recent years, and a widening of the mortality gap between RA subjects and the general population throughout time.”
Reasons for the Rheumatoid Arthritis mortality gap
At least half of deaths of those with Rheumatoid Arthritis are cardiovascular related. Although modern cardiovascular interventions have improved life expectancy for the general population, the same is not true for people with RA. They say more research is needed to look for the reasons.
I do have some theories:
1) Recent improvements in cardiovascular disease mortality are related to improved medication, diet, and advanced surgical procedures. Maybe people with RA do not get cardiovascular disease for the same reasons that others do. So the treatments do not adequately tackle the heart disease of rheumatoid disease.
I also wonder whether:
(2) The heart disease in people with RA responds differently to those innovative treatments, or
(3) Heart disease in people with RA is less treated because it is not diagnosed as frequently or as early.
How should we respond to the Mortality gap? Next time, in part 3, we look at how research can aim to make this a better time in history for those who do have Rheumatoid Arthritis.
Sources:
medscape
About.com
Science Daily
Recommended reading:
- More posts on RA and mortality
- Is This the Best Time to Have Rheumatoid Arthritis? Part 1: Quality of Life
- Is This the Best Time to Have Rheumatoid Arthritis? Part 3: Response to RA Mortality Gap
- New data on prevalence of RA
I wonder if the heart issues are related to the constant use of NSAIDs? I've been taking Celebrex since it first came on the market. Kinda scary and yes, depressing.
I wonder if the use of biologics and DMARDS as aggressively as they have been uses lately are part of this cause. It is now usually standard to attack RA aggressively at the early stages, but yet the mortality rate is no better, in fact worse??? Hm!!!
Yea, we definately have not found the answer yet.
These studies look back over 40 years, so it's likely not the new drugs to blame.
Jenny: I am pretty sure that "regular" heart patients use NSAIDs a lot too.
Jamie: It's not that our mortality rate is worse; but that of the general population is improving and ours is not – so the gap widens.
It's eye-opening for me, because I never think of myself in terms of heart disease. Still have that childlike feeling: that could never happen to me.
Heart disease usually signals swelling or inflammation. Could it be the same cause of our joint swelling might also be the actual cause of heart disease? There could be a link between heart disease and RA which could mean the cure for both could be a result from both. Where is all the money being spent for cures or preventions? Just a case in point, I have RA and high cholestrol= inflammation indicators!
I don’t mean to sound morbid, but when it’s your time to go … it’s your time to go. I don’t think RA, or any disease, can alter a person’s time on earth. It can and does influence quality of life, but — by faith — I do not accept that it has the ability to shorten my life. That said, I am focusing on my treatment, eating healthier, etc. I am focused on my “quality” of life. I don’t know how long I have, only God knows that, but I want to be able to enjoy every minute to its fullest. That’s what “Living” is all about!
Sometimes, I see RA’ers debate quantity & quality of life. Whichever one someone picks, it seems that fighting the disease is still the best bet.
This post was a report about the current state of affairs. It’s been a goal of researchers to find ways to help those with RA live longer. They have not had much success yet.
I do believe in God’s sovereignty. My days are in his hands. I know he gives medicine & science the ability to heal & I’d love to live longer than my grandfather that had RA did.
Hi Kelly Thanks for your reply to my methotrexate queries Seems like after looking at the all the comments there is more for it than against Mt daughter works in a chemist and she said all the peop;le who are on their prescription lists for metho are doing very well none hav had any bad symptoms and shes very glad im on it Surely if it has anti inflammatory effects then it must help the circulatory system excess fluid affects the heart soive convinced myself that with healthy living and the right attitude I stand a pretty good chance of at least making 80ish and as im nearly 70 thatll do for me Think Positive guys it helps!!!
Hi Marion,
Way to go – a good attitude can only help. Your daughter is correct – severe side effects are rare and mtx does much good for most who use it. Unfortunately, there is much bad press on the matter. I hope it does help you to fight RA inflammation and live to 100. O:-)
Over the course of having RA for 25 years, I have seen several rheumatologists. Not one of them has ever asked me about my family history of cardiovascular disease. Not one of them has suggested or done any evaluations for cardiovascular disease. I have been seen at major teaching medical centers so, I don’t think that it is just the quality of physicians I have seen. I think they are just not trained to focus on this aspect of our care, even though it is well documented to be the leading cause of death for RA patients. If no one is monitoring for this disease process occurring concurrent with RA, it follows that we are not receiving treatment for this complication until it is too late. We as patients and our physicians can get so focused on what is happening with our joints and our pain that we forget to broaden our lens and see there are more things going on.
For me, it is so overwhelming just to deal with what I have to, that adding another problem to the list is too much. But in this case, I’m not sure ignorance really is bliss.
You have hit on an important point, Joy. I have been working on a blog related to this. True, I’m mostly over-whelmed too but the heart disease & osteoporosis that we are almost guaranteed to have need to be treated. According to what I’ve read, the cardiac disease of RA is not the same as other cvd, but we should still try. :rainbow:
I can remember since I was 14 having heart palpatations getting dizzy, fainting, seeing stars and having doctors laugh at me and ask me which stars are you seeing. Laughing all the time. I grew up with weak ankles and tired all of the time. Doctors told my mom that I was anemic. I would get cold sores when or just before I would get sick. I had all the childhood problems. I got married had four daughters and all through this I caught plursery, pnemiona, and cronic colds and heart palpatations and when I was 26 they started to listen to me and I was diagonised with several things and given meds that didn’t help and would take myself off and hear from the doctors what an ingreatful pateint I was. Mean things said on my chart. I finally went to a naturalpath and he found in that one visit that I had RA. He told me to go back to my cardioligist tell him to send me to a RA specilists. I did this and then was told it would be not until July 26th and this was April 4th. I let it ride but contacted the naturalpath and then before I hung up the RA office called me and within the next week I was in. I am now doing clinical research. During this time of waiting I did Bromelin, Turmeic, Catsclaw, fish oil (liquid) and ibprofen (lots) then took myself down to 1200 mg aday.
Good luck with the clinical trial Margie. I’d love to hear how that goes.
I have been ignored many times by doctors who look at me and decide I’m not a candidate for heart disease,5’2, 120 lbs. I have morbidly high blood pressure at times, rapid pulse, and I am on two heart medications daily. I have off the chart high cholesterol, which has now been deemed genetic.I have severe carotid artery thickening. I was diagnosed with FM in 1997, and finally an RA diagnosis in 2009. But the pain, rashes, swellings have been going on my whole life. I went through the standard stress test and echo cardiogram, but even though I am told there is nothing wrong, I still have chest pains. I believe that I will die before a doctor realizes I have something wrong with my heart. This problem will persist until doctors agree that they do NOT know everything going on with auto immune disease.
You are so right – but I hope that at least you are getting good care now that it sounds like there is plenty of proof to show the dr. I think this problem is ignored frequently by docs as you describe & it costs lives.
hi there,i found this article very intresting indeed! i have had R A now for 4 yrs,on methotrexate as i could not walk, i slowly got worse again eg,tumour on ankle,inflamed veins,chest pains,wrist supports, knee pain,malaise really bad, fatigue,morning stiffness,depression, weight gain 3 st,feeling im going out of my mind!!!!!!!!!!!and then to know that mortality rate is high! i stopped taking metho,as ive had pneumonia twice and TB,i find a few brandies every night ,relaxes me,helps with the pain in fact it goes! makes me more relaxed,makes and me cope better with life,i laugh a lot with my friends every night having a few drinks and i can be in the sun!that,s my recommendation for a good life when you have R A if i get liver problems re drink /if i get liver problems re methotrexate intake ,i know which one i shall follow !!!!!!!!!Cheers.i would love to be studied on!
I told my dr. Concerning the Rituxian treatments- I wonder how many yrs I’m taking off my life by getting them and she responded have you ever thought how many yrs you might be adding to your life? It stumped me as it’s hard not to think negative when your almost overwhelmed with depression 24/7!!! Just thought I’d share that!!!
Thanks. Your doc is right! I like her. Untreated RA definitely steals years; some studies are showing treatment may help us w/that battle.
Being newly diagnosed with a fairly aggressive case of RA I could not help but notice how quickly my doc said, “this will reduce your lifespan by 10 to 15 years” and changed the subject. I guess he hoped I wouldn’t ask any questions or better yet I didn’t hear him. Being 60 my first thought was well I won’t have to live with this as long as some have.
There are going to have to be some major lifestyle changes that should keep my occupied for a while. Tends to put things in perspective doesn’t it.
Thanks for all the good info it’s pretty new to me, so I have a lot to learn.
Yes it does put things in perspective Connie. But when your doc said that I wish he also mentioned that it might not be as true when it starts after age 60. It tends to be more of an aggressive systemic disease when it attacks at a younger age. Of course there is no way to know, and hopefully, you’ll find a treatment that quiets the disease and have many productive years left. Good luck!
Just thought I’d mention costachondritis – a technical term for inflamation of the joints in the rib cage, especially where the ribs join the breastbone and the spine. It causes some pretty nasty chest pain. I get stabs going from between my shoulder blades into a breast and my whole rib cage hurts if I take a deep breath. It’s easy to start worrying about heart problems with this. It certainly feels dangerous but it is just part of the joys of RA. So don’t get philosophical about your number being up. See a Doctor. It may just be costachondritis.
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I have RA my CCP test i got 250. I have been on methotrexate (MTX) for 1.5 years and it seemed even on the MTX the RA was starting up again- Swelling etc… my liver results have been elevated the last couple of times i went in… my Dr said he wont put me back on MTX (or any chemo) cause of my liver… i have an appointment with him next week but it would be nice to have more info going into this… i am not afraid to die, but i would like to know the prognosis
I’ve had RA since I was 26, since then I’ve been on almost every therapy I’ve ever heard of and if there is a shortened lifespan because of RA then I guess my family will be the one to notice. Since being diagnosed I finished my LE career. There were many years I was lucky I was behind the desk and not in the field. But there were also a few years on patrol that I probably shouldn’t have been. Luckily I worked in a suburban/rural agency that wasn’t busy all the time. I’d go into work, take 15 aspirin and wait for it to take effect. I’m now 47, out on disability pension (ironically not from RA but from getting hit by a car on duty). It’s now when I start thinking about the shortened life span b/c of RA, I still have 3 kids under 11 and it’s for them I worry, not myself.
The posts about RA and mortality are very interesting to me. I have had RA since the tender age of 7 (I am now about to turn 37). It’s been a domino affect since then.
Recently (last year between August and October 2013), I was admitted to the hospital 4 separate times for Euro-sepsis, which also included CHF and A fib with rapid heart beat. Being diagnosed with the heart issues is fairly new to me and it scares me!
I stopped going to rheumatologists a long while ago because in about 2003 I was admitted to my first of 4 different nursing homes over a period of about 7 years. My ability to walk to been stolen from me very suddenly. I had a couple of seizures that ended up contracting my joints so badly that I could no longer stand or walk. While living in the nursing homes there were no “young people” doctors, just Geriatric doctors. I still saw my regular PCP from time to time but specialty services were few and far between.
I have since, and FINALLY been released from the prison that was nursing home life in February 2011. I live with my fiance, whom I met at one of the nursing homes I lived in. I have yet to start being seen by another rheumatologist and it’s now February 2014. My reasons for not going are this….
I have been on EVERY and I mean EVERY medication there is for RA. All of the real serious medications like DMARDS and steroids have adversely effected my health and added nothing but complications. I figured what else can they REALLY do for me? I can’t take this drug and that drug for this and that reason. Nobody can help me walk again. Why should I even bother?
Don’t misunderstand me, I’m not depressed and I’m not giving up. I am an advocate for myself, others with arthritic conditions and even nursing home residents and their families (I run a Facebook page called Surviving Nursing Home Life). I just don’t see the point (for me personally)! All the doctors ever say is we can’t do this and we can’t try that because of your past history. I keep myself educated by being members of sites like this and reading things about RA online and in health magazines.
BUT…..
Now that I have these new diagnosis’ and complications I’m thinking of seriously starting back just for the advice and input a rheumatologist can provide. I see so many different kinds of doctors nowadays. My PCP, Addiction Medicine (Yes, I became heavily addicted to my pain meds and abused them for over 20 years), Urologist, Pulmonologist, and now a Cardiologist as well. The doctors believe my heart issues are connected to my RA (which everything usually is). My stress level has been so high lately that I started smoking cigarettes again after almost 4 years clean!
I have a wonderfully understanding, caring and loving man in my life for the first time since I was able to walk over 10-12 years ago and I don’t want him to see me in a coffin any sooner than I should be. I think finding this site was an omen of sorts. Reading the article about people that have RA dying young scared me! I’ve come so close so many times over the past decade.
I want to thank you for taking the time to share your wealth of knowledge with everyone. Like me, Kelly, you are a warrior and you’re fighting the good fight by helping others with your stories and insight. Sometimes it seems that helping others is the only reason to get out of bed on those real bad days! You know what I mean….
I have liked and subscribed to this page and I can’t wait to start getting emails about your newsletter and website. I consider the internet my savior because when I got real sick and lost the ability to walk I lost a lot of friends. The internet isn’t my only means of meeting people but during the Winter it helps a lot to be able to keep in touch with friends on FB and other social networking sites (I live in Buffalo NY and I’m sure it’s Winter reputation precedes itself).
because of some of the articles I have read today on this page, I am going to schedule a Rheumatology appointment as soon as I can. Keep up the good work Kelly! I can honest;y tell you that this blog and the time you have put into it may have saved my life!
Your Truly,
Jenifer
Buffalo NY
Hi, I was diagnosed with RA at the age of 37 I’m now 40 it came as shock as I’ve always been very active with sport and work etc I was put onto methotrexate with not much affect, I’ve had numerous chest infections and pleurisy which I’ve never experienced before, I’m now on enbrel I was just wondering if anyone could let me know their experiences of this drug! Thanks
Kelly, I am grateful for everything you are doing! Thank you!
My history of RA started 40 years ago at age 16. I have been on every drug known for treatment and doing ok on Humira. I just wanted to add on a positive note that I recently was able to buy a life insurance policy worth 4 times my income. This has never happened before!!! I was denied health/ life insurance many times. I find this to be hopeful.
I have RA and so far have been unable to take any meds for the pain it causes me.
Of course, the meds were only predisone. I have been unable to tolerate many meds
as my system seems to be different than many people.
Has anyone else experienced this problem? And if so, have they found any type of
solution. Any help would be greatly appreciated.
Thank you. Shirley Mangone