Can Rheumatoid Arthritis Kill You?
Rheumatoid Arthritis is a serious illness
This post is a response to what I’ve heard so many times about RA: “At least it’s nothing serious.” Well, some things about Rheumatoid Arthritis are downright serious. So, a warning to my readers that I am utterly serious today. 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.
A few ways death is related to RA:
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
- Inside of the larynx are the Cricoarytenoid joints (the vocal cord joints) which bring the characteristic hoarseness of RA. Both the swelling and the nodules can interfere with ability to breathe. Sometimes, a tracheotomy is required. Here is a discussion of this. Health central discussion
- 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, especially with mild disease. Some of them are fairly low in incidence when measured separately. However, taken together, there is reason for concern. Risks increase with the severity of the disease; RA patients with a more severe form of the disease are more likely to see some 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.
Edit 5/13/18: Read my book RA Unmasked for much more thorough and current information about serious health problems caused by rheumatoid disease.
Recommended reading:
- What Is the First symptom of Rheumatoid Arthritis?
- Mortality and Rheumatoid Arthritis
- My Quest for Answers to Questions About Rheumatoid Arthritis
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. :soldier:
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.
I ALWAYS carry an updated list of my meds :pill: just in case anything were to happen to me. Anytime somebody says they have this or that I pull out my list, which looks like a pharmacy inventory LOL, and say I have something for that :doctor: and it has become the biggest joke everywhere! Even in a Doc’s office! Laughter is good for the soul :silly:
God’s Blessings To All! :rose:
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. :chic:
I wish doctors would “give a straight answer” on this – as you say – to family members also.
I turned 50, on Monday. I was diagnosed with RA, on Wednesday. It’s been a week of rollercoaster emotions. This website has been so helpful. I’ll be visiting, on a regular basis.
Julie, Happy Birthday.:cake: I’m sorry to hear about the RA. I hope you’ll check in soon to see the new You Are Here mall map for newly diagnosed.
I just found this site and am so very happy to be able to read other peoples problems,and worries. It made me realize that I am not imagining things, like fatigue that is disabling at times, the extreme pain in every and all joint in my body. I once fell over an extension cord while helping my husband with a tractor, thought it was RA in my shoulder, waited for two weeks for the other one to blow up, my husband finally insisted I go in and have it e-rayed. Usually when one of my joints is inflamed, the other one on the other side of my body will blow up too. After two weeks, I went in and it was broken. I tell that story to anyone who wants to know what the pain of RA is like. They usually understand after they hear it.
Hi Teresa, I’m so glad you found us too! 🙂
I’ve already told your story twice to family members! Thanks for sharing it.
Wow after ten years of living with the pain, and misunderstanding I come across this website and I realize that I am not alone in the dark here. I have battled with RA for ten years now, and I have to agree with all of you the name needs to change. What would make people realize the nights that you lay in bed unable to move, and simply moan in constant pain. Pain that is so strong that you can not get out of bed and it would not help if you did, because when your feet hit the floor the thousands of needles that await your feet will be there to pirce through from bottom to top. That is if you your legs your knees or your hips are strong enough to even support your weight.
What sort of name would spell out the embaresment of your hands hurting so bad that you can hardley hold your own tooth brush or fix your hair? What name would spell out the emotional, spirital, and pysical pain that you endure every day when you wake up. Then there is the question of the pain that your family must also endure with you, of watching all these things happen to you and being helpless to save you or help. There is so much more I would share or say but I don’t think I have to say much to this crowd, it seems as if you have all shared in some if not all of these things. Thanks to all who have posted. While it seems depressing and almost worse to know that this will never get better, it is good to know that I am not as alone as I once thought. I will book mark and post more here. If I can be a help or an encouragment to anyone please write.
Dale Bradley
Hi Dale, thank you for taking time to comment. As far as a name, I’ve made a suggestion (Rheumatoid Autoimmune Disease), but it really doesn’t express what you are saying does it?
As long as there is such little understanding of RA, the best thing that we have is to communicate with one another – knowing that someone gets it. Your words remind me of my own recent struggles to floss my teeth or make my son’s bed… It’s so hard to be unable & not have anyone understand why.
Hey Kelly,
Thanks for the post of support and understanding. It has been one of those sort of weeks for me. I am still working, and I have to admit that my job requires a lot of physical labor. I wish that I could find something else but the money and the benifits keep me here. I think that my scarriest option is the fact that I know that in the near future I will be foreced out on disability. I was just kneeling down for a bit to work on some equipment this week and while my knees and ankles were screaming for relife I really dreaded trying to right myself again. So with great effort I finally pulled myself back up to my feet. Once as well while laying down to work on the same equipment I found myself laying longer than I should have on the ground just because I did not want to endure the pain that was going to come with having to rise up.
Finally I just pulled myself up gritting my teeth and making funny faces all the while, but the fear just rushes in like a flood soon after. The fear that there may come a time when I will not be able to right myself with out someone helping me, and how is that going to feel. The fear that my boss may some day review my disability and say to me that they just can’t afford the liability that my inability brings with it.
I think in some ways though I see it as a blessing and the opening of a new door. I try to remain optomistic through it all. I keep telling myself that I can learn a different trade, and I can start over. Disability is not the end of the world, and I don’t have to stay on it forever. I guess just long enough to find something else that works.
I have wanted to go into the missionary feild for a long time anyway and carry the gospile of Jesus Christ out to the world, and the way I see it now is that when the time comes that RA will give me the reason, and belive it or not the strength to go and do just that. So I guess in my own weakness I am finding strength. It is not an easy journey as anyone who has RA and reads or responds to this post would agree, but I do belive that it is a destination that you can reach.
One of my great heros in life was Winston Churchill. Durring WWII when the Germans were bombing the Brits to a pulp parlament called a special meeting. Churchill was excpected to give an speech of conditional surrender so as to stop the bombing of the cities. Churchill walked up the podium and said, “Never, Never, Never Give Up.” then he turned and walked away. A standing obvation preceded him and he turned back and repeated the saying two more times. The English people would later come back stronger and more determeined than before against overwhelming odds and of course history tells us the rest of the story.
I live by the words of the Prime Minister to this day, even when I can barely move or walk. I refuse to give up and I will continue going even in the face of adversity no matter how bad it hurts, and no matter how long it takes. I will Never, Never, Never Give up. To anyone who is hurting I hope that you also take from these words the same courage as I do and continue to fight the long but good fight. I remain your friend and corospondant.
Dale Bradley Nelson
Thank you, Dale. “Never gave up” is what I’ve told my family will be my epitaph. Our best & only good option really.
I am very aware of all of the above – yet I have a lifemate of 43 years that thinks that “Humpty Dumpty” can be all better and return to perfection; if we do one more test. If he and my many love ones could let go; it would reduced the pressure of always ‘having to have the right answer and being on stage” as the perfect performer. I need friends and physician to ‘lighten up’ and let me be humorous about what I know is coming. Some physicians are actual upfront with my charming lifemate; but he does not seem to ‘hear’ which is even more stressful on me. I can’t be glamorous and brilliant forever. I am 65 but actual 80 something inside. The pain is nearly unbearable! Thom
I complained of pain for years, and I really never considered RA (didn’t even know what it was), but I got older and my primary MD asked me if anyone in my family had arthritis, I told her that my grandmother had RA (still didn’t know what it was), and in fact died from complications of it. Doc says, ‘hmmmpf, never heard of anyone dying from RA’. Thankfully she referred me to my rheumatologist anyway.
That was a stupid thing to say. It reminds me of a joke I was just told. “What do they call a person who finished last in his class in medical school?” Answer: “Doctor.”
Thanks for sharing your story.
I have just read your article about RA in the vocal chords !For a long time I thought there was something wrong /when I just stopped breathing a few times/ losing my voice/ hoarseness/no saliva in my mouth/at least now I know what it is!!!Thanks x
Thanks Kelly… You are right. We don’t like to think about the fearful, but we must. I want to put the link to this blog on my blog. But then I wonder if my followers will think I too am just being negative. The fact is that we need to be aware of these issues. We cannot be ostriches with our heads in the sand. thanks Kelly.. xx
Dear Tonya,
hmm, I know there are those who see it that way – that we should shield our eyes from the problem to be more positive. I don’t think I know anyone more optimistic than I am. I don’t think denial is the same thing as optimism though. I do think we are better off knowing what the enemy is so we can fight it as I was just replying to Caly about helping our daughters on the top post just now. If you haven’t seen it, there is a tag “death & RA” w/more articles on the topic – I’d recommend this one very much on do we have to die early? about fighing back – which is part of the point of discussing this. The other point you can quote me on is that there would be better research and treatment funding if people were aware of how serious RA is.
I think the daily struggles of dodging the bullets of this disease are what keep us from having the time to focus on dying early. The bullets can be the lack of diagnoses, fighhting for meds,tests,painkillers. Also we dodge the rolling eyes, and the oh so ifinite wisdom of how to cure the disease from the average citizen. Truly the daily struggle wears me out pretending at my best to not be sick, that it leaves little room to worry about my shorter life span. Hopefully this will all change and we all will not have to fight so hard to keep our rights and our dignity along the way and can focus on our prevention of a early death. Those of us that do educate ourselves, are also often told to not focus on being sick or also to get a hobby 🙁 REALLY? Thank you for always bringing important issues to the forefront and may the universe always give you the strength and energy to keep helping all of us find the answers and think about the serious questions at hand IE: like dying early!
Nikki,
so well said.
I can only say to them that my “hobby” is now trying to find ways for my daughters and your nieces to have a longer life than we may have and to help alleviate suffering in any way that God allows.
This one struck a chord with me, as with so many who have posted. I am 36 with four children and a wonderful husband. Just diagnosed 7 weeks ago with severe early onset ra.
When I post on my fb page how my post-chemo day is going, I have many concerned friends encouraging me with loving words and prayers for which I am so grateful. However, many times they will say, ” Friend, do you have cancer?” When I explain it is severe ra and what that means/entails, their response is usually, “Oh good, I’m so relieved!” This of course if funny to me because, yes, Praise God, I do not have cancer! But most times, cancer can be treated and over with, not to minimize it in anyway AT ALL. I am up against and living a life long currently incurable battle which has completely changed our lives. I do believe that even with my lengthy, informative description of the disease and treatment, they mostly hear arthritis which absolutely minimizes this daily struggle.
I have to say that RA has brought my family closer together, has made us communicate and love eachother better, and somehow the meds, God’s grace, or a combo of both have stopped my life long struggle with severly debilitaing migraines. God has allowed this in our lives for a reason and I do see the blessings in it.
Thank you for your site, I feel like I am here with sisters and brother who understand. Hopefully we can all work together to help others really get it.
God bless!!
Heather
What wonderful encouraging words, Heather. :rainbow:
Thanks Kelly:) You are an amazing witness! I feel much less alone being able to read your writing and other’s comments. If you are every in southern cal, I would love to have lunch!
I have a daughter with RA who has recently had to have surgery on her neck. Now my sister and elder daughter have been diagnosed with RA. My mother had it. Neither myself nor another sister and a brother have had any diagnosis of RA although I seem to get more aches and pains than my good friend. My father didn’t have it. So far none of my cousins, my mother’s brother’s children, who live in another country, have mentioned anything regarding RA, in their emails, However, it definitely seems to have a familial link somehow.
Can anyone tell me what the average life expectancy is with RA? I was diagnosed a year ago but I believe I’ve had it at least 3-5 years. RA has now complicated my lungs with pulmonary fibrosis so I’m sure that has also changed my life expectancy. My parents lived to their early 90’s. I’m 65 right now. I know this is a shot in the dark but I hear shorter life expectancy but no info of what that is.
Sharon, while it’s true that the life expectancy is reduced with RA by about 10 to 15 years, it has been noted that the disease has a milder systemic effect when one is diagnosed later (especially after age 60). So, let’s hope that’s right and you will live into your nineties as well. I think the best approach is to fight very hard and be extremely conscientious about medical care while assuming the best outcome.
How long have you had the pulmonary fibrosis? Do they think it’s related to the RA?
Thanks Kelly for your feedback. RA Warriors has really helped me. I was diagnosed with the pulmonary fibrosis in March 2011. I’ve had coughing and lung problems like pneumonia and bronchitis since I was a kid; but, they do think it is RA related. I’m not so sure since I’ve coughed for the last 5 or 6 years to some degree. It’s good to hear that the later in life you are diagnosed the better for longevity. Don’t know that I want to live to my 90’s but would like more than a couple of years and I know that the fibrosis complicates things. I appreciate all of the info that I get.
I think it’s wonderful that u developed a site like this for people to research this terrible disease. My dad passed away Dec 11, 2011 at the age of 51. He had battle RA since he was 18yrs old and RA is what caused him to pass it kept causing infection after infection and had already caused him never to walk again he spent his last year in a wheelchair and in and out of the hospital.
I’m very sad for you Amanda. I’m sorry for your loss.
I heard a doctor give a speech last week saying that a person is 6 times more likely to die of infection in the US if he has RA disease, even without any risks of medications – jsut from a broken immune system. But most don’t realize RA is even a disease at all – confusing it as a type of arthritis.
Interesting article. I’ve had RA since I was 20, I am now 35. My type of RA is extremely aggressive, I have been on Methotrexate, Remicade and now finally Orencia (which god bless has prevented me from having flare-ups). Unfortunately blood work still shows my inflammatory markers are still really high; nearly triple. It’s unfortunate that so many people are ignorant when it comes to this form of arthritis. I’ve actually had people tell me “it’s not that bad”, give me dirty looks when I’ve had to use my permit to park in a handicap spot or even worse call me lazy when I required an electric wheelchair on 2 occasions. I was told I’d be in a wheelchair by the time I was 30 (luckily I’m not), have had 3 surgeries, and yet am still working full time as
an activities director. Thank you for writing this article and informing people of what RA is and what it can do.
Welcome Michelle. Sounds like a lot of things have happened to you that are familiar to many of us. Congratulations on still working full time.
I believe the ignorance will end as we begin to help people realize the disease is more than a form of arthritis, but a disease. Arthritis is actually only one of the symptoms.
I was on Enbril, methotrexate, & plaquenil etc when I was rushed to the ICU and evenutally treated for disseminated histoplasmosis 2009. I would not be alive today had the doctors not tried the antifungal therapy. The source of my fungal infection is still unknown – and my medical therapy today is severly hampered by the possibility that the infection will return.
I am so thankful to find your website – but wish you included more information warning others of this very serious issue. I would be happy to share my personal story if you believe it would help. thanks, Robin, Kansas City, MO
http://arthritis.about.com/od/brms/f/infections.htm
Living with RA is frustrating to say the least. Like many of you the fact that when you say Rheumatoid Arthritis usually the first thing out of someone’s mouth is “Oh I have arthritis in my knees, etc.,etc. It really hurts the soul to think that so many do NOT understand this disease simply because of it’s name! I am 48 and am currently taking Orencia IV once a month, methotrexate, plaquenil and arava – plus Naproxen. My markers usually still run from 48 to up in the 80’s! Everyday hurts, everyday I am TIRED!
I have had synvectomy on my right elbow, left elbow, right hip, knee surgery, rotator cuff surgery, ulnar nerve surgery in right elbow and have now been told I have neuropothy in both legs and arms! Go to the Orthopedic Surgeon on Thursday, probably going to have a second surgery at least on my right shoulder and elbow (again)! I have RA nodules in my lungs and chronic Bronchitis!
I say this out of frustration that as many drugs as I take this horrible disease is still ravaging my entire body. It does my heart good to see other posts and to not feel all alone in this fight and that their are others who do understand your pain and fight! I am on disability and I too get mean looks parking in a handicapped spot. I know that feeling all too well.
I want to thank you for this site it has helped me tremendously and let me know what all we need to do to get the name changed! God Bless you!
One question, isn’t Orencia and Methotrexate a chemotherapy drug?
RA Joint problems…yes
RA Eye problems….Cataracts at age 50
RA Lung problems….pluerisy and nodule
RA Heart problems….arrythmia due to nodule
RA infections….frequent and long lasting.
Oh my gosh, Kelly, RAD IS a KILLER for sure. My mother, who died at age 62 had RAD since her 30’s and suffered so much. She took every available drug and treatment and was and still is one of the worse RAD cases I have ever seen. I helped her as long as I can remember, but never really knew what she was dealing with. She would lock herself in her room and not allow me to come help at times. I could hear her screaming in agony. My dad would go in with a shot of some sort or a big red pill that would knock her out. After I was married and out of the house, she had to call me once to help her get out of a chair she had been sitting in all day. It is sad that her life ended when her kidney’s started to fail and while in the hospital for that, she suffered a massive heart attack and died within a week. Her death was labeled as a “heat attack”. I knew it was RAD. I am grateful for the fact that she did not have to suffer any longer and she did not have to see ME get RAD and watch what I am going through. She always said to me…”Oh, they will have a cure if you should ever get this.” My big sister died at age 55 of pulmonary fibrosis. (a different autoimmune disease). I have already gone through many of the problems associated with RAD, like pleurisy, a serious and potentially fatal lung abscess that ruptured, and a massive heat attack that was moments away from taking my life among countless infections, rashes and drug side effects. It is always the PAIN that is in the forefront for me. The depression and guilt all gets to me, also. I do not want to get old. I told my new Rhumy, I am more afraid of staying alive than I am of death. I could go on and on…but most of all, I want to answer the question of “Can Rheumatoid Arthritis Kill you?” YES, it can.
Oh there is nothing I can say, Robin to respond to this. I’m sitting here working on how to explain in 5 minutes why this is a serious disease that needs more treatments. I wish I could just read your comment. But I know they would dismiss it as “atypical.” Not atypical enough, in my mind. Bless you.
Recently I was diagnosed with RA. I am 27 years old, and they caught my RA rather early. It is affecting my kidneys, but we’re hoping that we caught it early enough.
I read this article because though I am scared to DEATH, I refuse to take it lying down. It’s good to know what can happen. But…It won’t get me without a fight. Thanks for posting the information.
I am shaking my head.
I am newly diagnosed 3 months ago, but as I reflect, I may have had this monster for 5 years or more and was told I have fibromyalgia or costochondritis.
Now I am in the hospital waiting to see if I have pleurisy or some sort of heart damage after having 3 days of stabbing pains in the left rib area.
I had no idea how this disease affected the entire body.
I am scared and angry.
I am so glad that I know about the promises of Jehovah and Jesus. They promise to end sickness, pain and death. Thank you. Thank you.
Revelation 21:1-5
Dear Helen,
I hope that the docs can provide you relief and get you clear answers quickly. I’m so sorry that the RA is causing such problems for you – being in hospital is hard enough. Not knowing exactly why is harder. Thank you for also sharing your faith that God sees and will hear your prayers.
Love,
Kelly
I was diagnosed with RA just a few days ago, and even among the few people I have shared the news with, I have been surprised at how it seems to be an instant trigger for one-upmanship e.g. “Really? Well, I know someone who just got diagnosed with stage 3 pancreatic cancer so you’re really lucky” … sorry, I didn’t realise it was a competition for “Who’s Got The More Scary Disease”!
Hi Kelly,
I have a question that’s been troubling me for some time now and I’d appreciate your thoughts on it. You mentioned in one comment that life expectancy is reduced by 10 to 15 years for people with RA. The average life span of a woman in a developed country is around 80 these days. I know on average most people are diagnosed in their 40s or 50s. And this is just a lot of averages but assuming this holds true, someone diagnosed at 40 would die around 65/70 years of age after living with the disease for 25-30 years. Well I’m 23, diagnosed at 20, if by some miracle I live to be 65, I will have lived with this disease for 45 years. That’s a big difference. So I guess my question is how long do people live for after being diagnosed on average? I mean this disease is progressive…
Well, I just tried to get life insurance. It was denied. If RA wasn’t serious, I don’t think they would have denied life insurance for me.
You know this has been the worst thing I have ever red in my life. I am 15 and my youngest Brother was diagnosed with this at birth and has been battling this for 4 years now. I am no longer in contact with him because of one of my parents. Knowing that this could happen to him literally kills me because I am missing major parts of his life for no reason of mine. I wish I could see him one day and I don’t to see him next when he is in hospital. Quite a few of my family have different health problems but they have never been as serious as this. I don’t why I red this in the first place because I have only cried about it for hours and it will be on my mind constantly now but I needed to know, I needed to know whether I was worrying about it for no reason or whether I was right. Sadly I was right and I wish I wasn’t because now I hate myself even more. I am sorry to have moaned about my personal life but I have nobody and maybe this is the only way I can get help. Sorry
Leah, I just read your post and wanted to let you know that while it’s sometimes normal to feel survivor’s guilt when someone you know struggles with an illness or disability, that’s not something the rest of us would want you to feel. This is beyond your control, and your guilt won’t be the measure of your love for him. Know that you’re being a wonderful sister to be willing to educate yourself, even when it’s painful to learn all the what if’s. Many people with this disease have no one who is willing to do that. I am lucky to have people in my life who are caring and understanding, but a neighbor down the street has a much different experience from those who are supposed to love her. Your brother will be lucky when you are both old enough that you can choose on your own to reengage with each other. For your sake, too, know that not all of us experience the worst of this illness. There is hope.
Thank-you Linda for your reply and I know that not all ‘the what ifs’ might not happen but that still doesn’t take the pain away. But at the minute I’m keeping strong because I am slowly regaining contact with him which is giving my hope. Once again thank you for everything that you said as it was nice to hear someone say that to me. I hope you get better soon
i rheumatid osterprrsis bone desaese , and it’s taking over my body , i am only 49 years old , it is killing me , the doc’ give many pill’s , and shot’s , they don’t help , they don’t care , i have no use of my right hand , so i have hard time typing with left hand , i am right handed , i have n thyroid , this all became of lymn deasase , apx, 12 year’s ago , and is hitting me hard , i am baseacally BED RIDDEN , i am giving up , i have TRYED EVERYTHING ! please help me ,
Michelle,
I’m so sorry that you are having so much pain and problems. I wish I had answers for you, but please know you are not alone in spirit. I will keep you in my thoughts and hope that the doctors help you find some relief.