3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”

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Why “complications of Rheumatoid Arthritis” is an irritating phrase

As I read news articles and journal abstracts on Rheumatoid Arthritis almost every day, I am annoyed at the use of the phrase “complications of Rheumatoid Arthritis.” Rheumatoid Arthritis is a complicated autoimmune disease which can attack almost any part or system of the human body. Scientists can describe certain effects of the disease that have been observed up close, but they have no idea what causes the process of Rheumatoid Arthritis to begin or how it actually happens.

Did you read here last week about the newest standards for diagnosing RA ? One rheumatologist had commented about the existing RA diagnostic criteria that “Satisfying the 1987 criteria is bad news. No one waits till the disease becomes erosive to start disease modifying therapy” (Doctor Alan J. Stilman in a post on EGMN blog.) The mental picture of Rheumatoid Arthritis that most doctors, researchers, and writers still seem to have is reflected in those criteria:

RA is primarily a hand disease which causes swelling and deformity of hands and wrists, also creating a persistent state of inflammation which can be detected by Rf, ESR, and CRP. Eventually, Rheumatoid Arthritis can affect other joints or organs.

They are calling the actual disease a complication of the disease

I have heard the “hand disease” statement from doctors. This is also the picture of Rheumatoid Arthritis that most in the news media seem to paint. That is why they frequently use the phrase “complications of Rheumatoid Arthritis.” They seem to think that the hands are attacked first, then other joints – and then, sometimes, other systems of the body. They call any illness or deformity which actually reflects the complexity of the disease a “complication” of the disease.

However, as Dr. Silman affirmed, the RA of that picture is one that is more advanced: it is “bad news” because the disease has advanced enough that permanent damage has begun to occur. The hands which reflect obvious Rheumatoid Arthritis are not the hands of early RA. That is one reason that I have asked people to share their RA Onset Stories to begin to paint a clearer picture of early RA.

Just a few examples of so-called complications of Rheumatoid Arthritis: Sjögren’s syndrome, loss of voice, iritis, pleurisy, vasculitis, osteoporosis, and heart disease or inflammation. Interestingly, each of them have been seen as the first symptom of Rheumatoid Arthritis.

It’s not that complicated to grasp: these are secondary Rheumatoid Arthritis symptoms

If I’m driving to Walmart, and I get a flat tire, that is something that “complicates” my trip because it has nothing to do with the purpose of it. But if my long shopping list is the reason that I’m late getting back, that is not a “complication” because buying whatever’s on the list was the purpose of my trip to begin with. It’s not too complicated to distinguish.

Correcting the terms used to characterize RA may make a difference

Early Rheumatoid Arthritis is still difficult to identify because most do not know what to look for. I have begun to wonder whether hands are affected most obviously because they are most used. However, they may not actually be the first thing attacked.

  1. Correcting the use of the term “complications of RA” could help patients and doctors to think about the disease differently, improving diagnosis.
  2. Understanding the mechanisms of Rheumatoid Arthritis will be the first step on a journey toward a cure for Rheumatoid Arthritis. Researchers may be able to see accurate portrayals of early RA as clues as to how it begins.
  3. Accurately describing Rheumatoid Arthritis could go a long way at curing the awareness problem we have with RA.

Stay tuned for articles in a series on complications of Rheumatoid Arthritis which I may just call RA Is Complicated. Here is part one in the new series Cricoarytenoid Arthritis in R A (Rheumatoid Arthritis), part 1.

Related posts:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

22 thoughts on “3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”

  • October 27, 2009 at 12:37 pm
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    RA is real complicated disease. It is definately not cut and dried. I may have a “complication” of RA called Felty’s syndrome. Apparently only about 1% of RA sufferers get it. I see my rheumatologist tomorrow. Hopefully it will be a productive visit.

    Mallen

    (PS sorry about your flat, that sucks!)

    Reply
    • October 27, 2009 at 11:49 pm
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      I hope Mallen was joking about the flat ..wow.
      Anyways I wanted to thank you for all that have written. I am newly diagnosed and seeking answers. I think I have learned more reading here than any web med site. My family doctor sure doesn’t know squat! My rheumatologist cancelled on my first visit (she’s pregnant) so I’m still patiently waiting. Until then I read and learn, anything to distract me. Glad I found you, thanks again!
      Brandy

      Reply
  • March 24, 2010 at 10:14 am
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    a hand disease?! My RA hit me in every part of my body; I woke up one morning and everything hurt!

    Let’s hope the new standards and definitions of RA help educate people on what we deal with on a daily basis.

    Also, I thought you might find this interesting:

    A while back I looked up arthritis in the old family encyclopedia and was curious how it was defined. In the 1958 World Book Encyclopedia RA is refered to as rheumatism (chronic rheumatism). The only treatments then were warm dry climate, diet, hot baths, massage, passive motion exercise, and heat treatments.

    Thanks for your RA Warrior posts! You always have great info.

    Reply
  • March 30, 2010 at 9:30 pm
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    “Complications” I agree with your phrasing – RA IS complicated. Everything about it is Complicated – but the things it can cause are NOT complications, they are a part of the disease. I was in the hospital last week with what at first was thought to be an abdominal obstruction. I kept telling the doctors, the nurses anyone who came near me that I KNOW part of this is RA, I tried to explain that the internal inflammation was RA, that the high white blood cell count was high every time I have my blood work done. They were ready to do surgery to remove an obstruction that wasn’t there. FINALLY the CT SCAN showed that the obstruction was getting smaller (thank goodness it was before they cut me!) I have a lot of scar tissue from several surgeries in my abdominal area and when I got the inflammation it pressed against my stomach and intestines. I am usually up and positive but this past week I was SO DOWN due to the ignorance of doctors (until an older doctor finally listened to me because his wife has RA) – either way I am rambling a bit here but RA is complicated, living with RA is complicated, making people understand what you are dealing with is complicated, but the symptoms are just that – not complications………….Thanks for listening to my ramble tonight – tomorrow will be a brighter day!

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    • March 30, 2010 at 10:02 pm
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      Pamela, I’m so glad you came thru that ok. It sounds kind of scary. You must have been thrilled to talk to that dr whose wife has RA – the next best thing to a dr who’s had RA. I’m pretty down tonight too since I can’t move. Feels like I’m in cement up to my eyballs. Ouch. :pain:

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      • April 10, 2010 at 12:03 pm
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        I love the analogy – It is similar to one I use to explain the fatigue to my husband – I tell him it is like someone poured concrete through my veins!

        I hope you are doing well today Kelly!

        Thank you as always!

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        • April 10, 2010 at 12:14 pm
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          Pamela, there’s no way to tell you how encouraging you are to me. I’ll just tell you it is always needed & appreciated; never wasted. 🙂 I hate when there is concrete in the veins – but I love the word picture.

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    • October 25, 2014 at 4:13 pm
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      I’m wondering how you treated this blockage/inflammation. Did you dr. prescribe anything like an antibiotic or a different RA med?

      Reply
  • January 23, 2011 at 9:44 am
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    I’ve had RA for over 30 years now and mine too flared after I gave birth. Over the years I’ve had many of the complications related to the disease. I feel I should knock on wood when I say, right now, it’s under control with the use of Arava and minocycline. Over the years, I’ve read obituaries in the newspaper which had the phrase “complications of rheumatoid arthritis” and I always wondered what that was but also didn’t want to know. Three years ago I had an opportunity to learn about one of them when I was diagnosed with breast cancer. I was seeing an array of doctors but the one I depended on most was my rheumatologist (and I have a great one). I asked her what I should do. Normally in my situation, they would have done a lumpectomy and radiation. She said she thought I should have a masectomy and chemo. She said to have radiation so close to my heart–knowing that RA can effect the tissue around the heart and lungs–would be risky. She also told me that RA patients generally respond well to chemo and it puts their RA in remission for awhile. I took her advice and it saved me a lot of anguish. When the surgery was over, the doctors agreed that with no cancer in the lymph nodes or the breast I wouldn’t need chemo. I’m new to your website but I thank you for getting information out to people.

    Reply
    • January 23, 2011 at 5:08 pm
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      Thank you for sharing your story Susan. If you do want to learn more about reasons for rheumatoid deaths, there is a Tag that you can click on to see a list of posts. Click on the Tags List to see it. One reason I’m writing about that is to find ways we can fight back & try to change this. So far, the high mortality rate of RA has not improved with other mortality rates, but Mayo Clinic doctors are studying to find out why. Very imporant.

      Reply
  • March 2, 2011 at 4:39 pm
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    This disease comes on the heels of Type 1 diabetes for 30 years,and Severe Coronary artery disease. It first started when I would awake and my hands would be all curled up and I could not uncurl them with out help. Then trigger finger. Then the right hand, then the left. Add to that cheiropathy(frozen shoulder syndrome) and I am one big mess. I am terrified on all levels. The medications,the exhaustion, the pain and what will I be like in two years. I am now 59 years old. My RA doctor acts like it is no big deal and so does my family. It is just “getting old mom”, I am told.
    This blog is sure helpful.
    But what I have experienced is ” assembly line medicine” at it’s finest. You mentioned you kept telling the doctors, but they would not listen. For some reason I have found that doctors do not want their patients telling them what is wrong. Like WE do not know our own bodies as well as they do.
    If we could only get real honest doctors with real time knowledge to partner with us to assist in managing this disease instead of fighting us or dosing us with meds that make us ill.
    I have put off for six weeks, taking the prescribed methrotrexate, out of fear of the side affects. I want to spend time with my grandchildren without vomiting all day or sleeping all day.
    I want to be able to leave my own home without the fear of getting some kind of infection.
    I want my RA doctor to take me seriously.
    Sorry to ramble on. I am not coping with having more diseases or finding new symptoms of RA. Or “watch out” for this or that.

    Reply
    • March 2, 2011 at 5:07 pm
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      Suzanne, Your wishes is the same wishes of every RA patient i know – these are the important things that we’d hope to change about how RA is treated. You have summed it up well.

      I’m glad the blog helps some. Take care of yourself the bet you can.

      Reply
  • July 25, 2011 at 7:13 pm
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    HI, I’VE HAD RA SINCE I WAS 23 AM NOW 57. IT’S HAD A LOT OF YEARS TO DO A LOT OF DAMAGE. WHEN IT STARTED O HAD OVERALL PAIN, FELT SICK, VERY HIGH FEVERS. THEN THE MORE GENERALIZED MORNING STIFFNESS IN SPECIFIC JOINTS MOSTLY HANDS AND FEET. A FEW YEARS LATER I THINK ABOUT 3, SEVERE DRY EYES, EXTREME BLOODY URINE WITH PROTEIN. THROUGHOUT THE YEARS HAND AND FOOT SURGERIES. THE MOST LIFE THREATENING I THINK IS THE ATLANTOATLAS SUBLUXATION. FOR THAT I HAVE HAD WHOLE CERVICAL FUSION WITH PLATES AND SCREWS FROM OCCIPITAL TO C6. THAT HAS BEEN THE MOST LIFE CHANGING. I NOW TAKE A LOT OF PAIN MEDICATION FOR THIS. IPROBABLY, THE NEXT MOST SERIOS THING I’VE DEALT WITH WAS INFECTION IN THE BONES FROM KNEE REPLACEMENT. I HAD A CENTRAL LINE FOR 4 MONTHS WITH IV ANTIBIOTICS AND THANK GOD I HEALED. I DO GET INFECTIONS ALMOST WITH EVERYTHING. THE LAST SURGERY WAS TRYING TO SCREW AND PLATE MY LEG BONE BACK INTO THE ANKLE. THE BONE WAS COMPLETELY DISLOCATED AND THE DANGER WAS IT BREAKING THROUGH. THE SERGERY WAS SOMEWHAT SUCCESSFUL BUT I WEAR A BRACE ALL THE TIME. IF IT GETS WORSE THEY SAID I WILL HAVE TO GET AN AMPUTATION FROM THE KNEE DOWN. I’M STILL A HAPPY PERSON AND I AM GRATEFUL I KNOW THINGS COULD BE WORSE. BUT I DO THINK THIS DESEASE DESERVES MORE RESPECT THAN IT GETS. IT HAS AFFECTED ALMOST EVERY ONE OF MY ORGANS; EYES, SKIN, LUNGS, KIDNEYS AND JOINTS. GOOD LUCK TO THOSE WHO ARE FIGHTING THIS DESEASE ON A DAILY BASIS STAY STRONG AND DON’T GIVE IN.

    Reply
  • July 27, 2011 at 3:59 am
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    Saying a prayer for you Vivian!
    Hugs,
    Chelsea

    Reply
  • January 24, 2012 at 9:29 am
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    I have been diagnosed with RA now for over 5 years, however this horrible disease has been within me for much longer. My hands are NOT deformed, my RA is attacking my joints, yes. But you can not SEE the attack from the outside! I am now scheduled for 4 more surgeries on both knees and both elbows. I am 48 years old! I have to have my nerves moved because they are inflamed and pinched in all 4 limbs now and my nerves are starting to deteriorate. You can’t SEE that but I can tell you that I can FEEL that! There is such a need for education within the public that it isn’t funny. I am soooo tired of hearing, oh you have arthritis, so do I. We have got to get this disease re-named….soon! I do not feel that anyone except unfortunately those that share my disease. I am so thankful everyday for your web site. Thank you! People hear the word arthritis and then they quit listening because they figure they already know what THAT is!

    Reply
  • April 16, 2012 at 9:21 am
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    as the years go by and i reflect on when my first symptoms began, i realize i had symptoms 10 years before i had the identifying flare-ups in multiple joints that led me to treatment. i had had undiagnosed inflammation that i had been blaming on certain physical activities whereas now, i am clear that some of these same kinds of symptoms are due to my autoimmune condition. an example is in my hands – after not having played guitar for many years, i picked up the guitar and got into a rigorous “woodshedding” where i practiced until my hands hurt. my fingers felt thick and swollen. this would subside but was always there and a slight handicap to my wanting to really go at it! today, i am lucky to get a day in where i can even finish one song without pain. but the feeling is the same – i recognize it! i used to jokingly call it arthritis. now i call it RA and it is no joke!!

    Reply
  • July 23, 2012 at 4:23 pm
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    I have been diagnosed with celiac spru, type 2 diabetes, hypothyroidism, I have been diagnosed with keinbocks disease and had a carpectomy done on my left wrist, I have had my gallbladder out over 12 0pertions on my hands, 2 back surgeries and finally about 3 weeks ago they scoped my left shoulder. They tell me I have a form of arthritis but they will not define it. Everything I am reading on your site points to RA and now I am wondering if it is not celiacs disease I have that has effected my intestinal track so much but more along the lines of RA. I a. only 52 and there are some days I feel like I am 90. I wish I knew what doctor to turn to to get a difinitive answer no one seems to really want to commit to anything,

    Reply
  • October 30, 2013 at 9:57 am
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    I really enjoyed reading the posts. I was diagnosed with RA 3 years ago. I am on Azulfadine and have bee for 3 month. I have always been very active and of course the disease has affected my feet. I seem to be doing much better on this medication but my RA Factor is still increasing.3 months ago I was in Canada climbing mountains, but since returning, I am completely exhausted all the time. I just gave notice at my job as after I work a stressful day I cannot do anything the following day. My primary care has run many tests but they have all come back within normal range except for the RA which has increased 3 points in the last 4 months. He has referred me back to my RA physician. My husband is very supportive and helps me accomplish what I am unable to do. I try to stay positive but it is difficult. I try to think of people that are much worse than me and that changes my attitude.

    Reply
  • November 19, 2013 at 2:49 pm
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    My irritation is the “hand disease” statement/concept the OTHER doctors have had.
    Thankfully, I have a well-educated & compassionate rheumy. The other doctors, not so much. One of the more recent experiences with that, was from my ophthalmologist. Needing to see him because my already very poor eyesight is getting worse quickly, and now I have really dry eyes that hurt & have sharp pains is getting scary.
    After looking at my health info & my lengthy medications list, he glanced down at my hands & stated,”your hands don’t look so bad, I would never think you have RA” he went on to give me a cursory exam & treated me as if I were a hypochondriac, or at least, overly concerned the rest of the exam. What does one do with that? I mean besides find another Dr..
    It happens all the time.It is exhausting looking for the right Dr.s & fighting the subject out with insurance. Finally I have a pretty good team, still searching for a few others that have bothered to become educated on rheumatoid diseases.

    Reply
  • October 24, 2014 at 12:34 pm
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    I was diagnosed with RA in May of 2012, but reflecting back, I think the onset was occurring many years earlier. I drove a truck over the road for close to 20 years and the last few years before I finally quit driving I started having problems with joint stiffness and fatigue. As a driver, fatigue is a big problem. “Well, you are over 40 now” my doctor said. I just pushed on, thinking it was just part of aging. When the fatigue got too bad, I retired from OTR and took a local job. My boss was always on me about sitting down so much, but my knees hurt a lot and it was physically exhausting to stand in one place too long. Then one day, I grabbed hold of a valve to turn it and FIRE shot through my hand and all the way up my arm into my shoulder. My hand was useless for 2 days, and when it finally started to work again, my OTHER hand started in. That was when I went to the Dr and was confirmed to have RA. My knees further deteriorated to the point I am unable to walk anymore. I also have hypertension, diabetes, depression and am morbidly obese. I have been taking mtx since diagnosis of RA, and rheumy has had me on Humira, Enbrel, Orencia and currently Actemra, none of which have helped me to walk again. When rheumy first put me on mtx, he also put me on folic acid to keep me from getting nauseated. I was told by a rheumy on another FB page that folic acid lessens the efficacy of mtx, so I quit taking it about 2 weeks ago, so far with no ill effects. During this time, I have noticed an increase in my energy level, and have even had the strength to leave my room and join the family in the living room on a couple of occasions. Do you think there is something to that about the folic acid, or could it just be a mental issue with me wanting to see improvement? In any case, hope my story helps someone who may have been experiencing the same issues. Keep up your fine work here! You are an inspiration to all of us! 🙂

    Reply
  • October 25, 2014 at 2:15 pm
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    I hope you come back to read these messages. I have a question for you. So how did you treat this blockage/inflammation? I really relate to your experience and wonder if you added any meds/maybe an antibiotic. I’ve been put on Cipro and Flagyl, but I don’t really FEEL any different after 5 days on the new antibiotics. Sometimes I feel like I’m chasing a cloud or something: hard to define symptoms that I just don’t want to get worse!!

    Reply
  • May 8, 2015 at 12:57 pm
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    WOW, I am so GLAD I found this site; it has answered questions no doctor has!!
    I was dx with Lupus back in early 90’s due to a blood pressure med a doc had given me… once off that – then was dx with RA, and some form of a liver issue so doc did NOT PUT me on methotroxate. It has been many yrs now and am now in late 60’s and having had past 2yrs of HORRID LUNG issues-(have had most of my life)…and eye problems, am NOW discovering it ALL May be due to RA?? We recently got a rheumatologist here locally, who I will be making an appt to see.
    THANKS SO MUCH for all the information you have put on this blog.

    Reply

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