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
OMG – I READ THIS NOW I AM REALLY SCARRED , MY WHOLE BODY IS FULL OF R.A. , I TRY TOO DO THING’S I WANT OR NEED TO DO , BUT I JUST CAN’T DO NOTHING ! I AM ONLY 49 TEARS OLD AND I FEEL I AM DONE , AS IN DIEING , I AM SO SCARRED , WHAT CAN I DOOOO , PLEASE TELL ME SOMETHING IS UT THERE TOO MAKE IT GO AWAY ,,,,,,,,,,,, MY DOC’S ALL THEY GIVE ME IS STEROIDES ! I HATE IT CUZ IT MAKES MY HEART HURT , PLEASE HELP , PLEASE
Im 15 years old and my father suffers from severe RA. I just recently started doing some research on how I can help him if I even can at all. I was wondering if maybe you could email me some ways that I can help besides helping him with labor and small tasks that he often needs help with.
I’m so thankful that I stumbled onto this blog! I was diagnosed at age 17 and am now 38. The first 9 or 10 years my RA was classified as severely active and now I think it would be knocked down to moderate. The “new”biological meds are responsible for that ( I started on enbrel about 13 years ago and am now on humira, I also take an NSAID and methotrexate.) I relate so much to all the comments here. I’ve heard everything from “oh, you are to young to have arthritis, that’s for old people” either laughingly or accusingly, like I’m lying. I endure certain people in my life who don’t understand the sheer exhaustion of the disease and openly show that they think I’m just lazy. My c-spine is ow affected (when I was first diagnosed my rheumatologist was firm that RA couldn’t affect the spine so I ignored various symptoms for years thinking they were unrelated) my RA has been with me so long that i don’t really remember being able to run, or having good range of motion in my shoulders, being able to squat, hold a pencil normally and so many other things that I don’t even remember that I can’t do…. And wear pretty shoes, my shoes have gotten uglier as the years have gone on. Please someone, invent pretty orthopedic shoes!
It is encouraging to hear from so many others that are like me.!
My fiancee was diagnosed with RA June of 2011 at the age of 66. He passed away 2/15/13 the doctors said the RA attacked his lungs and killed him. We did not know it could kill him!
I’m very sorry for your loss, Karen. And that there was not better information or help for him.
Wonderful group of articles. But one I would like to add is Rheumatoid arthritis and the connection to autoimmune hepatitis. My Mama had R.A. and Lupus. But she died of autoimmune hep.Which 13 years later I find out is Rheumatoid arthritis of the Liver!When R.A. attacks the liver, it will shut the immune system down fast, in my Mamas’case 3 weeks!She went from walking around and in fair condition to losing her life in three weeeks. There is not much info, on this complication out there, My Mamas’ bithday was in September ,she would have been 65 and she died in May, at 64 years old. I too have Rheumatoid arthritis, RH postive And I am well into second stage.Because so many of the meds have effected my liver too, especially the Biologicals, my own prognosis is not good. I have had R.A. 16 years.If you could help me find more info on auto- immune hep, I would apreciate it!,Sincerly Rochelle Hay
I am not sure that my post went through. Wonderful group of articles! I would like to discuss, the connection between Rheumatoid arthritis and autoimmune hepatitis. My Mama died of this complication, she was 64 years old and she was diagnosed w/ R.A. and Lupus. Auto hep, took her life in just three weeks. I too, have R.A. complicated by, fibromyalgia, and osteoporosis. It was not until, recently, I found out exactly what auto hep. is. It is R.A. that attacks the liver.It kills swiftly, by shutting all your organs down, one by one. I have had to get off the biologicals, because these drugs effected my Liver too. I have had R.A. 16 years,I really cannot find out to much about this secondary condition of hep. It is very scary for me and strangely the doctors will not give me enough info. I’m scared I too, am going down the same path.
Sorry for the duplication, new to this!
HI! I can sympathize!You have had a rough go. Just wanted to make a comment about SHOES!!!!!I totally agree! I have had both ankles double fractured plus a reduction in one(ankle was dislocated)had several surgeries, have pins and plates and unbelievable swelling 5 years later!R.A. has done it’s ugly deed, on them. I’m still fairly young, I see all the pretty high heeled shoes in the store displays and long to be a Girlie girl again and wear those heels! But alas, it is never to be.And what’s worse my feet look so bad ,a beautiful pair of shoes, would look just awful on these feet! I live in cute CROCKS, but imagine going out for a romatic evening or to a concert in CROCKS!!I am so disgusted, just become we are handicapped and ill, does not mean we want to stop living!
Here is my story,I have R.A., suspect Lupus, fibromyalgia, and osteoporosis. In 1997, I fell in my backyard after using the hose to wash down my window screens,I landed on my hand & fractured my hand so badly it was called a Boxers’ break.I had surgery,& plates & screws were installed. Two weeks after surgery my hand started to swell,but no infection was found, I was dismissed as complaining about pain that should not exist, by my Doctor. One week after this happened,I woke up and I could not walk at all!I was rushed to hospital,and extensive labs run, including lyme disease test, and found I was RH. postive, I did not walk due to pain that could not be controled for 6 months after that. Swelling other than the hand was at a minimimal in my legs but, my tailbone and spine were effected! From then on my life was “Fraked”. I have tried Enbrel, Orencia, Humira, and several other biologicals.These biologicals, seem to send my R.A. into overdrive!Nothing has helped but predisone, unfortunetly, and every time a med fails up goes the intake of Pred!Now, without the pred. my system will shut down on me, thyroid and adrenline goes heywire,I used to be rail thin, now I am 50 pounds overweight due to the pred. and in activity, and this is my life as I live it now!Now my Mother died with complications from RA.Lupus, and auto immune hep.I have cousins with R.A. and Lupus and had one Grandmother who had it, and guess what, now my son, is showing symptoms!It is probally heretary for us.I have fractured both ankles from falls, again plates and screws installed and fractured my elbow, I am 50 years old and have had this disease 16 years!Before my falls no symptoms, can you dig that R>A. warriors?
I am a 40 years old and have been dealing with RA for 13 yrs. I have tried every therapy out there…Enbrel, Humira, Remicade, Orencia, gold shots and now on Rituxan infusions. I almost lost my sight 8 yrs ago when the RA started to destroy the sclera of my eyes. went on an 8 month course of Cytoxin. Thankfully did not go blind. But unfortunately problems with the eyes again. Just found out monday that scleritis is back. Back to chemo on thursday. Not only can i lose my sight, I could actually lose the eyeballs if the RA destroys enough of the sclera to perforate. But I’m stubborn and keep pressing forward. I realize that i can’t control the RA…only my reaction I have to it. Sorry to ramble on….but the word Arthritis doesnt seem to be enough for people to understand the emotional and physical pain it causes.
I was diagnosed at age 18 but had been having symptoms since I was 16. When I was 18 I was going to school to school to become an RN but wasn’t even able to finish, cause I became bed reiden. I stayed in bed for about a month and then my dad made calls got me in to see a doctor that gave us a referal to see a rheumatoligist. I remember this day so clearly cause my dad and I had never been really close and it was the first time I realized that he truly loved me. We drove to the doctors office and when we got there I wasn’t able to walk. So my dad went to my door and picked me up like a baby in his arms and carried me in with tears in his eyes. We then signed in and we were sent down a long hall and instead of asking for a wheel chair he picked me up again and carried me down the hall.( my dad is 5’11 and I’m 5’9 so you can imagine). Then he carried me in to see the doctor and the first question out of his mouth was ” Is their a way for you to cut off my leg and give it to my daughter?” Oh man that really touched my heart that be was willing to do that for me. Especially since I felt not worthy cause I was a teen mom at 17. After that doctor put me on treatment and I was out of bed in 3 days but man that prednisone made my gain a lot of weight that I still haven’t been able to loose. I was on that for 3 years. But no matter what treatment they put me one my RA got so severe that by the time I was 20 I was put in a wheel chair I remember begin in so much pain not bein able to move my hands and knees they were the worst and always feeling tired I would sleep all the time. It made me so sad that I couldn’t be a good mom. By the time I was 25 they finally decided to do a total knee replacement and during that time I ended up getting a really bad pain near my chest it hurt so much but they couldn’t figure out what it was they did an MRI and nothing so I had to live with the pain. Then I saw my rheumatoligist and he found out I had Plursey, and man does that hurt. Then the following year my wrist fused on their own but a Mon was sticking out so I had to have to more surgeries to shave my bone down so it wouldn’t break legaments in my hands. Well now I’m 31 and I’ve had worst times in my life so I’m happy I got things a bit under control I’m on enbrel but I’m not to sure its working anymore. But to me I hate that people act like I’m not in pain cause they can’t see it. Thanks for reading my story sorry for all the type o’s and bad grammar and punctuation. I would also like to share that I think my biggest mistake was that I had never really liked taking pills so in the beginng I never followed my treatment there for I believe I caused my RA to get so bad. So please people follow your doctors advice.
Thank you for sharing your story. It helps in some small way to know that I’m not alone in this young category.
I just was told by my physician that it is a good chance that I may have A Musculoskeletal Disease called Rheumatoid Arthritis. I am in a way relieved because I now know why I’ve been feeling the way I have been feeling for the past few months. But that does not stop me from being scared. I’m nervous of what will happen and how serious it is. I have a nodule that can be seen on my chest and growing on my rib which can be felt. I can only give it to God and let him handle it.
I have been dealing with pain for 10yrs now. Mostly in my back and feet. The first time I went to the Doctor for my back was when I could hardly walk, I was unable to stand straight and was in agony for a month. Over the past ten yrs I have experienced severe back pain once or twice a year. About a year ago I woke up one morning with severe shoulder pain as if I had injured it the previous day or through the night, I went to the doctor and was told it was fine. I went back 3 months later as the pain became severe, and was told it was a calcium build up and nothing could be done, it comes with age. I then went back a few months later to request a scan or xray, hesitantly the Doctor provided me with the request. Unfortunately life and children along with work took up my time and despite the continous pain I did not proceed with the xray. I have suffered feet pain most mornings for a very long time, I put this down to my work job and long hours on my feet. About 3 months ago I went to the doctor to find out what was going on with my feet as the pains were getting worse. I was told it was flat feet, I went back a month later after it became severe and was impacting on my mobility and was told I was overweight and to make the flat feet problem go away I had to loose weight. I decided I needed to consult another doctor when a few weeks later I could hardly put foot on clutch in car and was barely able to walk, I woke each night because my feet felt like they were on fire. Pins and needles a lot and I could no longer wear shoes from the swelling. The new Doctor did blood tests and explained to me that the resuts had come back and you have Rumourtoid Arthritis, I asked what that was and what it would mean for me, he told me that I would just get pain in my hand and fingers which will become worse with age. Plenty of my own resesrch has given me a different but well informed story of what I could really experience from RA. Its so sad that not even the general population need to be more aware of this disease but even our own Doctors. I am so glad I come across this site, I really believe it is easier to cope with something better if you are more educated on it.. Thank you everyone for putting your stories out there. Rochelle.
My 93 year old father recently passed away. The cause of death on his death certificate was listed as RA The doctor told us that his back was so riddled with arthritis it was a wonder he was even alive. He had never been to a doctor his entire life (didn’t trust them)
Hi Kelly, I notice your not replying as much to comments, are you struggling more now? Great site… Very helpful.
In 2015 I will have had RA 40 years. I’ve been taking NSAIDS for at least 20+ years. In May 2012 I started having stomach problems (no appetite, feeling full very fast, and strong stomach pains). I also take omeprazole for stomach pains. Pepto quickly became my ally in that it helped some of the pain. I ate only because I knew I needed to. In a year I lost 45 lbs. EGD and stomach CT scan were negative, thyroid ok, now they’re checking liver because methotrexate and prednisone could cause stomach problems. They stopped my Celebrex in late February.
We all want to lose weight and that part I liked, but it’s scary when I don’t know why. Has anyone had any stomach problems like these? I’m about what I weighed in high school. My skinny clothes are getting very loose.
I’d appreciate any help you could give me. oh yeah, I’ve had bi-lateral hip and knee replacements, and both hips have also been revised. I’ve been on Disability since 2005 and generally good health except being overweight before this started.
Thanks!
Ceeny
Hi Ceeny,
In 2015, I will have had RA for 39 years. I have had major stomach/digestive issues for years. I’ve been hospitalized several times for it; in fact, I just got discharged from the hospital because of stomach pain/vomiting last Thursday. I have had every diagnostic test that I know of, and they still aren’t sure exactly what is causing it. My latest GI doc discovered that I have partial gastroparesis—the motility of my digestive system is very slow, because of the autoimmune RA. Now my GI doc wants to send me to the Mayo Clinic in Jacksonville to get a very specialized test—a double balloon enteroscopy. I try to stay away from foods that are harder to digest and eat more frequent SMALL meals. I know that a lot of people with RA have digestive/stomach issues, so you are not alone. I would suggest that you find a gastroenterologist who has experience treating people with autoimmune disorders like RA, and request that you have some other diagnostic tests such as a HIDA scan and a gastric emptying test. You can look up these tests on mayoclinic.com. I hope you’re able to find some answers soon!
Thank you for this! I am so sick of folks comparing my RA with their arthritis! I’m not saying arthritis is not painful but you don’t have a shortened life span because of it! I’m also sick, sick, sick of doctors who are not honest because they believe if they are truthful then the seeds of truth with bare fruition to a patient who gives up on life! I think hypocrisy is worse! Give me the truth so I can make planned decisions to make the most if what I have here and now (not that I don’t do that anyway). Anywaz, thx!
Thank you, Barbara. I printed out your response and will ask about those tests. Its good to know that I’m not the only one with stomach problems. I’ve come to accept that this may be my normal for awhile. I watch what I eat and eat small meals. Not really meals–more like snacking.
Thank you for responding. I hope you have a nice weekend
Ceeny
Hello everyone. I just recently found this page and, of course, I’m freaking out. To sum up my life thus far, I was diagnosed with RA on December 21, 2010. My 25th birthday. I have been suffering from severe RA symptoms for 3 years now. I had a very sudden and painful onset of symptoms just a month and a half after my wedding. I have been determined to live my life as if I were normal, but it’s not working. Nothing is the same and in the space of two years I lost a bone in my hand due to RA and I have bone spurs in one of my knees that cause all kinds of issues. I feel almost lied to. My doctor is amazing but I don’t feel like she prepared me for the severity of my disease and what it would do to my body. It wasn’t until after my husband watched a tv show where someone died from RA that I even realized this disease could cause my death. Ive been researching everything i can since then and my mortality has never seemed so real. I worry that because my disease is so aggressive and that it appeared so early in my life that I’ll die long before my time. I fear that I’ll miss my son’s life and that I may be prevented from having another child. Sorry to make this post so long. Just had to get it off my chest.
Hi I don’t know if you will see this but I got R/a 2 months before I turned 21 I have chose not to take any medication and believe me it’s hard all my joints are affected from my jaw to my feet sometimes my pain is so bad I wish I didn’t wake up my best advice is let your hubby keep you pregnant I am now 28 with 6 children pregnancy will put you in remission it may only last 18 months at a time but to me it has been worth it look at it like I do, what are we?a grown up fetus methotrexate is used to kill fetuses so if it can kill what we once were how is it not going to kill us I will never take methotrexate
I am 46 yrs old, have had juvenile rheumatoid arthritis since age 5. It has dramatically impacted my life. Many time spent in the hospital growing up and many foot surgeries. At age 41 I had open heart surgery, the arthritis affected my heart and I had a valve replaced with an artificial one. Because of the fact that it was mechanical and they did not monitor my blood correctly one month later I have a severe stroke. I could not speak and my right side was paralyzed. It was over a year of constant therapies, from speech to hand to PT, etc. I have recovered remarkably, the first year I just wanted to die but I couldn’t leave my wonderful husband and mom and doggie. So I fought. It was extremely hard. I was wondering what my life expectancy is and I happened upon your article. Very interesting and I love hearing people’s stories. For me, my life changed when I was about 12 years old and my mom was in a bad mood. I was complaining about my pain when she said “I can do nothing for your pain so stop telling me about it”. From then on I realized probably most people don’t want to hear about my pain and I stopped complaining about it. There is nothing more anyone can do, I take Humira and about 15 other drugs. I try and look at the positive. There is always someone much worse than you. I am lucky in so many ways! I have to add that having jra was a terribly painful life, pain every day I can remember, but having a stroke was the worst thing I have ever been through. Open heart surgery was much less difficult than I thought, having a stroke is horrible beyond words. About 1/3 of my brain is gone. I also have to say, something someone else wrote about, using my placard. I was told at 20 I had the hands and feet of a 90 year old. I have had foot surgery so many times including 3 years ago. And my right side is severely impaired because of the stroke. Yet people say something as if I were using the placard and there is nothing wrong with me! I mean, many times. My stepson does this often. I say, I need this, I have terrible pain when I walk. He says “you don’t need a placard” and nothing I can say changes his mind. No one knows what you go through except you, really.
I just wanted to add I could not write or understand words after my stoke. It was like I was going through childhood again except in a terrible way. I had homework that was so basic, I couldn’t understand what a dog was or a bench or most anything. It took me years to be able to write and I just recently started typing again. I mean, a few months ago. I improve from my stoke still, five years later. As hard as it is, I have hope about everything. Who knows how close they are to curing JRA? Miracles happen everyday!
I don’t know who all may read this as of 2014 but wow, I had to come here to face facts. In the mornings, I slowly stretch out of my bed because of my rib cage and spinal cord. When I’m on my feet, I am slightly off balanced thanks to the damage done to my knee by RA. I am on medication but it doesn’t help, it only seems to prolong the inevitable that is pain and more pain to come. I am only turning 24 and yet my life is just seems like the story is reaching it’s end too soon. I can’t even sneeze without popping a bone in my chest. I have to be honest with myself that I don’t see anything getting better for me at the least. All in all, I don’t see my life or other RA people as hopeless. I believe that Jehovah God is going to take of us all in his own due time. (Palms 83:18) I wish you all peace and many blessings. The fight isn’t over until it’s over but I’m ready to go out on my feet than in my bed. Each day is made grand, the trick is to just find a way.
Thank you for writing this. I find that the misunderstanding is one of the most difficult things to deal with because people do not understand how serious the condition is, how much pain you are in, how this affects you physically and mentally. I have found a serious lack of sympathy that would be given without question to, say, a cancer patient, for example.
I really Dont care what anyone thinks about me for saying this but I have my own treatment for RA. It works for me & there’s no pain. I can go about my day pain free. What do I use? I do meth. I’m not sure of the side affects if any but I know I live pain free as a normal functioning adult. I’ve tried not using it but the pain is so intense that I want to die. I Dont use to get high. I only use to be able to get up every day.I live pain free & meth is what enables me to do so.
I would never judge you for doing what you need to do to control your RA pain. Mainly I’m wondering if meth works for you, why does it work? Meth is extremely hard on the body, but then again, so are disease modifying drugs like methotrexate. It’s possible that the stress it puts on your body is suppressing your immune system in a similar way. Or it might be working in a way that’s more akin to adrenaline in that it allows you to function without feeling the full extent of your injuries. Or maybe it’s a bit of both.
I get that you just don’t want to be in pain anymore. I had two family members with RA (they’ve both since passed on) and based on what they’ve told me the pain is horrific. But knowing why meth helps you is important. If the drug is simply masking the pain then the RA is still damaging your joints.
Bottom line. It’s your body and your life and you know what works best for you. But you should explore your options as far as legal drugs and treatments that can control your pain and the course of the disease itself for the following reasons.
1)Removes the danger of being arrested.
2)The ingredients in prescription drugs are much more carefully controlled.
3)Your RA could still be causing joint damage that will lead to disability later.
4)Lastly meth might not be your best option as far as controlling your pain. If you don’t have a rheumatologist already you should get one.
I started with RA in my early 20’s and since I have had 2 wrist fusions, every joint on my rt hand replaced and one twice. Also index on left hand. A single, a double, and a triple arthrodesis on my rt. ankle with bone graft from hip Osteotemy on 1-5 with a node removal on rt foot. Osteotmey on 1-4 left foot. I now need a node removed from rt elbow and more work on hands. I have been avoiding biologics but now know how out of control the RA is with nodes forming and want to continue walking my 6 miles a day and know I will not be able to if it gets any worse. So I will bite the bullet and change my attitude about how it is easier to replace a joint than a liver! And through all of this, the hardest and most challenging thing about having RA is not having a support system because very, very few people understand the pain, frustration, anguish, and the fear for your life. So you are on your own, and that is hard, but you do it! And hope that the people who never ask how you feel will never feel what you are every minute of the day with no end in sight. Don’t ever judge a book by it’s cover, open it and look further into the pages. I am now 60, and one thing is for sure if I stop moving it will be all over. So I keep moving and have stopped waiting for that support system. I am my best support system because I don’t judge this book by it’s cover!
Hi I have had RA for 4 years and took MTX and prednisone. Now it has attacked my lungs and I have got a diagnosis of BOOP. Is anyone aware of this and any feedback help would be greatly appreciated. I am on oxygen 34/7 now for the past 2 months and am miserable. I am 48 years old with 3 teenagers.
My mom was diagnosed with rheumatoid arthritis around age forty. The disease itself is awful. It was probably the worst when she first started having symptoms and none of us knew what was wrong. She said the pain was worse than childbirth and it felt like her joints were being slowly pulled apart; which unfortunately is somewhat accurate as far as what really happens in the disease process.
Disease modifying drugs certainly helped with the flare-ups. It made her symptoms bearable and at all of her doctors appointments her joints were found to still be in fairly good shape. Unfortunately she was in pain more often than not.
I was somewhat aware of the fact that rheumatoid arthritis could result in early death but truthfully I didn’t want to think about it.
Something like 6 or 7 years after her diagnosis she was hospitalized with congestive heart failure. The drugs she was taking had reduced her immune response to the point that a virus attacked her heart. She was in the hospital for about a week and almost died. She recovered, and actually managed to recover without any lasting damage to her heart.
It was 6 or 7 more years before my dad rushed her to the hospital with severe pain in her chest. She didn’t know exactly what was wrong when it was happening, but she knew she was going to die. The doctors diagnosed her with an aortic dissection and performed open heart surgery. By the time I arrived at the hospital she was out of surgery and in a medically induced coma. I cried and told her I loved her but I think she was already gone. We waited for days, but she wasn’t waking up after the drugs should have worn off. The doctors discovered that not only had her aorta ruptured, but her carotid arteries had been torn as well causing massive brain damage. She wasn’t going to recover. We had to let her go. She was a month away from her 54th birthday and I still find myself lamenting that she had to die so young.
It’s been 3 years since she died and I still ask myself if there was anything that could have been done to prevent the aortic dissection. Ever since her RA diagnosis she met with her rheumatologist regularly to monitor the disease’s course and make sure her liver was handling the RA drugs etc. The only thing that I can think of that we could have done differently was to monitor her blood pressure and cholesterol more closely. After the episode of congestive heart failure she went on a low sodium diet to keep her blood pressure low. She also had a machine to check her BP at home and I think she was taking a beta blocker. Apparently that wasn’t enough.
The only thing I can conclude is that when a person’s body attacks itself every organ system becomes vulnerable. Even though RA primarily affects the joints the chronic inflammation it causes and the runaway immune response is extremely dangerous.
I have been recently diagnosed with interstitial lung disease due to RA inflammation of my lungs. I am presently on oxygen.
I am being monitored by a pulmonologist at National Jewish Hospital in Denver. My rheumatologist is a professor at another local hospital.
I am thankful for that but I know RA is bent on killing me. The race is on………… Who will reach the ten year line first?? Me?…..God willing.
I was born with RA and am now in my 40s. As RA does, it has gotten worse and worse through those years and now cam no longer work due to pain, feeling sick, and fatigue. I’ve been fighting for disability for 4 years now and appealing their denial yet again. I wish the judge could spend a week in my shoes then tell me again that I am too young. I’ve heard I am too young all my life, but for some reason RA didn’t get the memo. For all you men out there with RA and are taking narcotic pain meds, be sure to get your testosterone tested occasionally. While getting testosterone replacement therapy won’t stop RA, I felt better and less depressed when my T levels increased. What really pissed me off was when I finally figured out I needed T and started therapy, when I told my pain dr. She said, yes, narcotic pain meds do that. Why didn’t they say this before? I don’t get doctors! Another thing to add to your site about RA killing you is the much higher instances of suicide when the pain and liss of hope gets overwhelming.
I just recently found out my dad has RA and its really bad I thought he was dieing from cancer until he finally told me what it really was Just the way he has changed so rapidly and his voice is different he calls all the time now to tell me weird stuff like he can’t be around forever and he wont be able to leave me anything he just had a baby boy not to long ago and started a new family he is only 50 and Im 34 my health sucks I on disability but thats a whole nother story just wondering if I am @ higher risk cause all the guys have died young and we tend to pass down the same illnesses…. Its really sad he is such a good proud man and its literally destrying his life and he might have to return to work cause it is draining his finances…. why is it so miss understood especially buy SS and any insurance for that matter…It sucks the name must be changed and more awareness should be spread
RA sounds like it horrible to have. I myself dont have it but my girlfriend does. Its sad to hear her say that she wish she could be in another body or die to be in another body by how much pain she has some days. I dont think she takes any medicine for it since the effects it has on her but she was diagnosed at a young age. She was diagoned at age 19 and is now 30. I wish i could make it all go away and make her feel better.
Hi Duckie – It IS horrible. But I’m sure it is a great comfort to her that you care so much to read about it.
I have two auto immune conditions since January 2015, these are RA and Sjogrens. I am on restasis 2times a day a new lacrilube once at night. Also 200 mg. Plaquenil. I was on 1ml injection once a week . This I quit on Dec 3 2015 . I started 10 mg. once a day Arava .on Dec 10 2015 . On the 29 of Dec started a very severe rash that lasted 11 days . I quit Arava immediately . I consulted 2differnt doctors. They said it wa drug related. On Jan. 19 I will have a tele conference with my RA doctor.
Can RA.be caused by prolonged exposure to black mold?
I have never heard of that Glenn.
I am 47 yrs old and have RA.. I have noticed that I am losing weight from the waist down ,my legs are getting smaller and I am having to put extra holes in my belt.. has me worried.. what is your suggestion.
I have RA and Osteoarthritus.. losing weight on my waist and down .. kinda scary . I am only 47 ..
May I ask how old you are I am 47 and have the symptoms of RA for almost a year but am unable to seek treatment because no insurance it is Truely painful you have okay days and very bad days RA Sucks that’s for sure ?
My arthritis is very painful,the swelling is really bad especially in my hands and I found out two years ago I have cateracts.I am not the only one in my family suffering,i have a twin sister and a couple of brothers who have Arthritis too so I’m not alone and each one of us have different problems and I’m the highest on the blood work for rumitory arthritis factor and its scary but I’m glad that we have Google to help us know what to expect and my fatigue is really bad but I’m glad I know now that it’s part of my Arthritis.
My mom was diagnosed with RA in 2010. At the time she was diagnosed she had the same Dr for over 20 years. I remember her constant complaints and all the different medications she was given, to no avail. He never bothered to explore any further, because according to him, her arthritic spine was to blame. He thought she was an addict that who wanted stronger meds. At the time of my mother’s diagnosis, the rheumatologist said she was the most advanced case for initial diagnosis he had ever treated. She was placed on methotrexate, steroids and ultimately biologics such as Humera. She developed vasculitis of the major blood vessel to her brain, which left her with a brain mass, seizures and paralysis. Memory loss and dementia soon followed. Repeated bouts of pneumonia left her wheezing and fighting for breath, having to use oxygen and nebulizer treatments several times a day. After a full year of hospitalizations, nursing homes and rehabs, I quit my job and left my husband to move in and bring mom home to have her last month’s with her family. I no longer wanted her in the hands of others. I was medically trained and knew nobody would love and care for her like I would. She was progressing too quickly and the Doctors said there was no hope of recovery as she was now considered terminal. Less than a year later mom was gone. She suffered tremendously, and was completely bedridden and dependant by the time she died. She couldn’t talk,walk, sit up, roll over, laugh or even breathe on her own. From the initial diagnosis till her death from RA was barely 5 years. I’m 43 years old my sister is 45 and we were both diagnosed recently with RA. The blessing is we have both learned so much and were diagnosed way earlier than mom was. Some days are better than others and Sissy is worse off than I, but we will fight this disease because we have the chance mom never did.
My mom has both rheumatoid and psioratic arthritis she suffers 24/7 from terrible pain.She has become hyper allergic to any form of medication so cannot take any pain relief…is this something that can happen?
Kelly, I now tell people I have Rhuematoid Disease not Rheumatoid Arthritis. I get a completely different response when I do this. They pause for a moment which gives me time to explain what it is and they are always very compassionate and understanding. No more, “Oh I know. I have a bad knee” or “I have a few fingers that get stiff every now and then”.
I so agree with you. I’m so sick of when I say arthritis people just think they have it to and can relate. I get so upset with that. People just don’t understand what we go through and how it can literally kill us. I know say I have a auto immune disease. Because I’m so sick of people just thinking this is just simple acks and pains. So yes I think we need a new name for this disease.
I have been following your site for quite some time now. In addition to my RD, last week I was told my blood tested positive for Lupus. So now with both diseases, I’m somewhat numb and wondering how it all will work together.
Plaquenil has been added to my regimen of medications. I understand it can cause eye damage. Anyone else on Plaquenil, what do I need to watch for. Anyone with both RD (RA) and Lupus, any suggestions for me in dealing with both Systemic Diseases.
Thank you Kelly for the wonderful job you do in educating and supporting all of us. Prayers for you as well!
Just curious if you’re still on this site. I’ve got so many questions.
right here.
Kind of funny…but not. When I got the RD-Lung diagnosis a year and 3 months ago, its like the RD went into remission in my joints, and now its all about the lungs (and the heart too I suspect). All my pulmonologist will say is that without a biopsy there’s no way to tell how much time I have, and I’m not going to put myself through the expense, nor the procedure, just to “know”. So he tells me “average is 2 1/2 to 4 years, depending on how fast you progress…” I’m progressing faster than I want LOL. Yes, RA, I mean RD can kill you. As I’ve been told, once it hits the organs, its game over. But we must remember, this doesn’t happen to everyone who has RD. I’m writing my final letters to loved ones, buying future gifts for them birthdays and such. I cry a lot, but I think a lot too, about the good times, the things I did as a kid, the roller coaster rides, my first real date, the first time I saw my husband, I think about friends I’ve had over the years. And I’m grateful. Grateful for all of it, that I was given the opportunity to be a part of God’s grand plan in this world. I was able to raise two son to adulthood and even watch my youngest get married, I had a career (that is about to come to an end when my disability retirement is approved and I can go home soon for good), I did a 5 year stint in the US Coast Guard after high school and got to travel to wonderful places. I’ve had a good life. My only worry is I don’t know exactly how this will end, I don’t want my family to have to watch me suffer for every breath, or have to “turn off the machine” even though I’m well aware it may come to that, and I’ve left specific instructions on that. Death doesn’t scare me, the process of dying scares me a lot. And I don’t think it will be long, the way I’m breathing now (and since the pulmonary emboli episode and 4 days in ICU in November doesn’t help a bit), if I’m still here this time next year, I’ll be surprised. When I was diagnosed with the RA, nobody ever told me it could come to this, until it did. You newbie RA’ers, educate yourself, and this is the perfect site to start, Kelly has done a wonderful job here. Don’t wait for the doctors to tell you, sometimes we have to school them. 🙂 Thanks for listening.
Dear Melissa, I’m so sorry about what you are going through. Death doesn’t scare me either becuase I so look forward to a new body in heaven – that works again. I hope we can meet on this side though – so make sure you docs are listening to you and do not let your symptoms just worsen. I always say, well if these problems were in someone without RD, then they would be treated – so we need that same top level of care – even if we have RD. It is never hopeless.
Send me an email in a few wks when I finally get this book published and I’d like to give you a copy. Unfortunately I now know that the disease always has its extra-articular effects – not always the lungs – but all of us are affected.
I find out tomorrow if I have RA. I’m scared, because I’m afraid I already know the answer. I’ve been trying for over a year to get my husband to understand how bad I feel at times. Now is getting so bad that I’m finally being tested for RA. My job is very stressful and I get depressed and want to cry because I can barely get through the day from the pain and fatigue. I’m thinking I’m going to have to quit my job and we will have to take on a whole new lifestyle. I’m only 47 but feel so much older. The depression from feeling like this every day is getting so hard. I just want to find out and try to get treatments. I’ve been having trouble breathing lately and with my digestive system too. I know everyone will blow it off as if RA is nothing. My grandmother had it so when I was told that is what they were testing me for I started crying. I’m so glad others understand and I can talk about it . I’m learning through all of you I’m not alone.
Hi Kelly,
Thank you for this site and your generous work and sharing.
I first came across RA Warrior when I was diagnosed with RA in 2013 at age 57 after many years of unexplained pain and diminishing performance across all areas of my life. My diagnosis took a long time to sink in. Especially as I was first told I have a mild inflammatory rheumatoid arthritis. I only heard the “mild” and “arthritis” and, whilst complying with all treatments, continued to deny any problem, labelling myself as “less fit”, “lazy?”, anything other than chronically ill. Almost embarrassed to have a weakness. The rheumatologist added fibromyalgia, osteoarthritis and Sjogren’s to the initial diagnosis.
I admire how you stand up for yourself and I have just begun to do this and to ask for help. It’s hard to cover for sleeping for hours on bad days and doing very little! I have directed my family to articles on your website and they are now reading and understanding.
My latest shock is finding that I have atherosclerosis despite a lifetime of healthy choices and I do mean super-healthy choices in diet and lifestyle. I’m on the 95th percentile for coronary calcium score risk. My husband and my friends are have mostly scored zero! My general practitioner sent me to a cardiologist and I am now on a statin and a low fat, low sugar vegan diet. (I was vegetarian for the last 20 years). I also have family risk factors for CHD and am treated for high BP. I just changed from Enbrel to Humira and still on 20mg methotrexate but had a big flare up in the changeover. Still waiting for the good effects. I had a reasonable 9 months out of Enbrel, then it seemed not to work, but perhaps it was that the RA got worse. I’m disappointed that neither my generalist nor my rheumatologist focussed on my heart health. The focus has only been on joints. The recent testing was done because I had “attacks” suggesting heart-related problems. Also anaemia was missed as my fatigue was put down to RA. When the haematologist did my iron infusions he said that RA causes a false high in ferritin readings so we should watch for that. It really goes on and on and I say having RA is like having a baby to care for and that baby is me! Does it ever stop getting worse? Thank you. Kind regards, Megan
Hi I’m from Australia and I have no one to really talk things over with or understand what I am dealing with, I also have to deal with Anxiety and chronic depression, Type 2 diabeties, an aurotic leak, I have joined a few groups, but all seem to be in the US mainly and one in the UK , I am a member of a pain group here in Australia, great group but once again no one with RA or Lupus. My RA doctor I have great faith in him but he’s not a good talker he pushed hard to get me on certain meds because nothing was working after a couple of months, at one stage I was on methoxirate for many years as an assist to other meds, tried many types of injections which were brilliant for a while and 3 different infusions the last one EmbrelI was on for 11 years, my bloods almost down to 0, Rpa was 5. CRP was 2 about 9 weeks ago. I had been having real trouble my feet, basically couldn’t feel them except for a few toes the numbness started to affect the outside of both legs and left arm it was one of the main side. that was my last chance medicine, nothing left for me try and the doc will revisit in 3 months…. I did try to sign up for your news letter but apparently you don’t service my area, not too sure what that is about….I am not sure if this will even post, worth a try….
Hello, I am 65 and I have been diagnosed with RA about 11 yrs ago, My main pain is spine, legs, feet, shoulders and hands. My extremities are always in some level of pain, I cannot walk far as I have had way too many falls. My legs suddenly just stop working. My vision is blurry and I have daily head aches along with pain in both eyes, mainly my rt one. I have not seen a Reumatologist for this, my regular Dr, has me on Gabbapentin, and pain pills along with lidocaine patches, which are failing to help less and less as time goes by. Is there something a specialist can do to help m with the pain, burning ect and weakness? Thank you Linda