Rheumatoid Arthritis is a serious illness
This post is a reaction to the many times I have heard “At least it’s nothing serious.” Well, some things about Rheumatoid Arthritis are downright serious. So, I want to place a warning to my readers that today I am utterly serious. For once, I have found something that is not a joking matter at all.
A few months ago, I read an old interview with Debra Norville about her mother who had RA. The author said that she had “died of Rheumatoid Arthritis.” Norville’s mom is not the first, of course. My own grandfather’s life was cut short and RA apparently was part of that.
Let’s look at a few facts:
You do not need to read the all links to understand my point, but even though it was tedious, I wanted to provide them for anyone who may need to begin a particular search. And they prove my point, too.
- Rheumatoid Arthritis can attack the spine. When the C-1 vertebra is affected, pressure on the
spinal cord can lead to paralysis or death.
Clinical neurology book
- Rheumatoid Arthritis of the pericardium (
heart lining) interferes with heart function. There are also nodules and inflammation of the muscle itself.
Web md
- RA can attack the
lungs in a similar way to the heart, inflaming the lining, or causing nodules. The pleurisy and the scarring both can be life threatening.
Mayo clinic
- Rheumatoid Arthritis patients sometimes die from
infections because the treatments suppress the immune system.
About.com
- Heart attack and heart disease risk is much higher. And much less recognized. RA causes inflammation and blockages of arteries.
About.com
- Rheumatoid Arthritis is associated with a
shortened lifespan. Some reasons, like constant inflammation, are obvious. Others are not yet known. Studies show that the mortality gap is not improved by treatments.
Medscape
- More widely known is the greater risk of cancer for RA patients. Some attribute this to the treatments used, but this is uncertain.
- There are dozens of other lesser known complications of Rheumatoid Arthritis which can contribute to early death including involvement of blood vessels, nerves, and other vital organs.
Some of these problems are rarer than others. Most of them are fairly low in incidence when measured separately. However, taken together, there is reason for concern. Risk increases with the severity of the disease; RA patients with a severe form of Rheumatoid Arthritis are more likely to see one of these in their future.
Maybe we do not talk about this because we do not want to dwell on fearful things. Maybe it is because we are too busy with learning to walk on knee replacements or trying to get our insurance to pay for the shots.
But, I worry because you can’t seek treatment until you know that there is a problem. Most of these problems are frequently undiagnosed in RA patients until they become severe. Why is that? That is a good question.
Recommended reading:
What Is the First symptom of Rheumatoid Arthritis?
Mortality and Rheumatoid Arthritis
My Quest for Answers to Questions About Rheumatoid Arthritis
Copyright © 2009-2010 Kelly Young, All rights reserved.
This entry was posted
on Monday, June 8th, 2009 at 9:30 am and is filed under Don't miss this!.
You can follow any responses to this entry through the RSS 2.0 feed.
You can leave a response, or trackback from your own site.
This post is a reaction to the many times I have heard “At least it’s nothing serious.” Well, some things about Rheumatoid Arthritis are downright serious. So, I want to place a warning to my readers that today I am utterly serious. For once, I have found something that is not a joking matter at all.
Subscribe to feed
Don't miss this!
Do you know how many times I've heard, "Sucks to get old." or "What's a few achey joints?" or "Happens to us all." That's my favorite. People just don't understand what it's all about. They hear only "arthritis" and nothing else. It's hard to make people understand how it can ravage your body. And don't even get me started on the side effects from the treatments. The disease needs to have another name or else it will continue to be misunderstood.
We think so much alike!
You must be right. ; )
Several months back, as I wrote my RA 101 for my upcoming site, I said the same thing: maybe we need a new name for RA.
For now, we can just answer RA instead of "Rheumatoid Arthritis."
I also avoid the word and try describing the disease first. As I said in the "…Wall " post, we must try, but then we are not responsible for the denial that some people insist upon having.
I CANNOT WAIT TO GET MY T-SHIRT PRINTED!!!! I may wear one every day…
Kelly
Thank-you, thank-you from the bottom of my heart for writing this post. I want to reread it and study the links. (I am slowly catching up on older posts on several RA blogs.)
One of the reasons I started researching, reading blogs, etc was to get an answer to the questions, "Can RA kill you?" and mainly "Could I be sick as I feel".
I am an older woman, looking for more blogs by seniors.
God Bless
MissDazey
Thank you dear Dazey.
I have been doin lots of research, too over the last couple of years. I have lots of senior friends who read my blog. They will definately smile at your comment. ; D
Kelly
My neighbor in the early 1990s had a severe case of RA and was of course treated in the "dark ages." He was a haggard man even in his 5os. He had numerous surgeries and was on disability. And he died in his early 60s from heart problems related to RA. When I was first diagnosed with RA, it was really hard not to compare myself with him. I'm hoping that newer treatments will help us avoid such prognoses.
BTW…how are the Enbrel injections going?
We are not in the 1950's any more thank God! But we have a long way to go…
Enbrel is still causing reactions. But it is begining to also give some relief. Nope – No cure yet. I'll let ya'll know. ;D Haha.
I'm glad to hear you're getting some relief from Enbrel. It's been two months for me and I still get reactions at times though not as bad as the first few times. I see it as a sign that it's working!
When asked about my illness, I first respond by telling the asker that I have an autoimmune disease. If they press further, I will then tell them "RA" and give a short version of why it's not the same as OA. It takes a few minutes but keeps my head from exploding. I have been very surprised about the number of comments implying that RA is unpleasant but not serious. I almost envy the luxury of that type of ignorance.
Ah, so well said KC!
I have tried that strategy, too.
I keep saying, "How can I get into your reality? Where RA is no big deal."
Usually, people 1st say that I'm too young to have arthritis. My family has watched me grow up with this life crippling disease and even they, still treat me like I don't need as much help as I ask for or that I'm exaggerating my pain or lack of energy. Its so hurtful because its all I want is for people to understand that I'm as normal as my body allows, but I'm truly overwhelmed with physical and emotional stress. You're right arthritis is NOT what this disease should be called. It needs something long, ugly, and difficult to pronounce to get the point across. lol
Deidra,
Your comment really riles me up to keep going. I am officially declaring war – WAR ON THE IGNORANCE AND ON THE DISEASE!
I'm so glad you found us here. And hey! I thought that "rheumatoid" is already a long and ugly word. How about if we say: rheumatoid disease?
Nice to meet ya,
Kelly
hey all,
Its a pity that the disease gets more attention because of the older folks who have it. I have lived with it my whole life I'm 25 by the way and I was diagnosed at 5 yrs old. so you can imagine the hell that my life has been. the doctors expected me to only live to the ripe old age of 21 =) yay for living past the estimated life expectancy.
I have been using the enbrel injections since october of 2002, it is a wonder drug and it gives me great hope for future treatments. shoot the only side effects I have had, have been some bruising and the weakened immune system.
is anyone else greatly concerned about the swine flu this season for obvious reasons?
I just wanted to thank you for the support and encouragement you are giving to so many of us RAers. At times I have felt that EVERYONE including the rheumatoligists think I am imagining the symptoms that accompany RA. The hardest issue for me has been the severe fatigue and the life style changes that have been made seen the onset of the disease. No more tennis, softball or even shopping trips to name a few.
I have had RA for 3 years now and recently had shoulder surgery to remove bone spur and inflammation in right shoulder. Still doing physical therapy its been 4 months since surgery, and orthapedic surgeon suggested I need another surgery on shoulder. The meds for the pain after surgery have caused elevated liver enzymes for the last 3 months and I haven’t been able to take Remicade or Arava. I have another Blood panel tomorrow to test liver function. I’m hoping to get the go ahead for infusion.
Ready for a miracle.
Terry
Good luck Terry.
I hope you can get your infusion soon!
My wife works for a pharmacy. The pharmacist there told her that he thought RA was the worst named disease in the history of diseases. People just seem to hear the arthritis part and think that is all there is to it… and we all know the similarities to arthritis are just a small part of the the things we have to deal with.
Struggling at the moment – diagnosed just over two years ago and thought that I’d come to terms with it (sorry RA that is !)
had knee surgery late summer for synovectomy and was coping well, but found that really struggling these last few weeks and beginning to wonder what if life donesn’t change, coprogression becomes more aggressive, work continues to be an uphill challenge, atching and wanting to cry when I can’t do things and husband looks as wants to take your pain but knows that he can’t
doesn’t change how I feel – sorry if it seems a rant just needed space to get feelings out of my head
initially wasn’t sure about reading this site – realised now that reason why I’m awake at this time, unable to sleep and needing to find a way forward
thank you for the time and effort that put into this – not an easy task and I suspect and thanks aren’t the reason why you do it
a very grateful, if not tired in every sense woman, sitting at her computer
re read posting – even fingers trying to tell me something! tme for a new keyboard – any suggestions?
I do not have RA, but I lived through watching my husband deal with all the issues you all dealing with every day, until he went to Heaven.Please do not pay attention to those who have NO CLUE about the seriousness of this disease. I applaud every effort you make, and I pray for a miracle. I see one hellava BRAVE woman friend,with RA, raising and home schooling five children, one into college and a 4 year old coming up the ranks. I see her hurt.I also think her heart hurts when people dismiss the seriousness of this disease. You are NOT asking for pity.. just that people understand the limitations. I have seen others, who do NOT have RA, expect so much of others,that they have crippled themselves, while my RA friend struggles along in silence.I pray for you all..and especially my dear Kelly.
this is my biggest fear for me anyway – Rheumatoid Arthritis patients sometimes die from infections because the treatments suppress the immune system. About.com
I had to stop reading at ten. I am 34 and was diagnosed at 25, about a month and a half before I got married. It wasn’t bad at first. I had some very real pain and inflammation in my right foot from being over worked walking door to door during campaign season. My boss was mad that I chose to get married during the election cycle.
My wife and I had our first two children exactly 9 mos and a day after we got married. We had been together for nearly 8 years. The twins were 6 weeks early, but relatively healthy. Our third came nearly four years ago and fourth 14 months after that. It wasn’t until recently that I got hit hard with fatigue. The pain I could handle for the most part. Aside from asking my rheumatologist to amputate my hands (only half jokingly) a time or two, I was doing well.
Reading the information and posts really hit home. I did very little reading when first diagnosed. My rheumatologist at the time was more interested in discussing her teenage daughters than she was in helping me. Thankfully she broomed me after I missed a couple of appointments and a blood test. I was too busy raising a family and trying to make a living.
I learned a very important lesson. I didn’t have to stick with one doctor. Sure, Rheumatologists are in limites supply, but I was successful in finding a new one. My new one immediately sent me for dexa scans, tapered off some of the meds and generally cared much better for me. He actually listened and asked questions.
What nobody really talked about though was the depression from the realization that my life will be cut short. That my children will not only miss their Dad because I need extra sleep, but I will meet my end prematurely because of the meds or some related illness. That stings. I live each moment to its fullest as often as possible now.
I started searching for sites to read and become active in in order to try to learn how to bring more awareness to this issue. RA is not a disease that only affects little old ladies near the end of their days. I am sorry to be so long winded, but this feels good to say. If anyone has any ideas on how to bring attention (and therefore maybe more research dollars) to RA, please share your thoughts. I am toying with the idea of going to my Congressman, Congress woman and Senators to ask them to have an RA awareness day or week nationwide. This of course will take some doing. I need help.
If you have made it this far, thank you for “listening” and please pass your ideas on. Let’s shed some light on RA together.
Thanks.
Thank you Brad. I’m sorry you have been through so much. You are correct about RA awareness. We have a long way to go & a lot of work ahead of us. Like you said: together we will shed some light on this.
Hey I was diagnosed with RA, a year an a half ago; I also suffer from scoliosis, so I thought that was my problem. I have pains everyday, many times am hoarse, I get many chest pains, my entire body hurts. My chest gets swollen and i am short of breath.Its not easy living with the pain, I stopped taking medications, I just got tired of all the meds. I dont understand why no one can get me to take meds. At times, I can barely walk or get up from my bed. I am only 21 years old…when I say that every part of my body hurts, I mean every part.
Lisa,
I am so sorry. I have a daughter almost your age. My heart goes out to you. Severe RA is very difficult to live with. I hope that you can get a treatment that will make it better for you. I get tired of medicine too. But we have to try to fight RA so we can live as much life as we can.
God bless you.
It is nice to know I am not alone when trying to find answers to the question “Can RA kill you?” I too am tired of people making comments that RA is just arthritis and we all get it as we grow old. I just quit telling people I have it. I also blame some Doctors for not giving a straight answer when asked this very question. Doctors need to be more straight forward on how RA can affect a person now and in the future. I am all for renameing this MONSTER and leaving out ARTHRITIS!!! Thank you
There is a lot of discussion among patients about changing the name of RA – this is a good one.
I wish doctors would “give a straight answer” on this – as you say – to family members also.