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18 Responses to “Sample Size: 1 of Every 100 RA Patients in U.S. Are Members of Our Facebook Page”

    1. Tricia says:

      There is a lot of information on this site about treating symptoms; I would love to understand root cause theories, treatment of root cause and alternative (non drug) therapies discussed. This condition terrifies me everyday and I am searching for what I can do to truly support my body.

      • Tricia, there is very little on this site about treating symptoms so I think there is a fundamental misunderstanding. Rheumatoid is a disease of the immune system in which it attacks an otherwise healthy body. If one really does have RA, it is not merely a “condition” which can be helped by improving health. It is classified that way as Lupus, MS, or Type 1 diabetes. Most who are stricken w/ this disease are healthy at that point, with many being very active, etc. The body is attacking itself with such diseases and the defense system has turned against the body so supporting the immune system as some have suggested is actually counter-productive. The few treatments that are discussed on this site are considered disease treatments which are the best science has at this time to get at the “root cause” of the disease. but you’re right that for most they are very inadequate. There is research about finding ways to re-establish “tolerance” which would get even closer to the root cause. Researchers I know are working very hard and what we are doing is contributing to the knowledge base. Understanding rheumatoid disease requires a thorough comprehension of the immune system and it is just taking time for that to be accomplished. It is more complicated than many other diseases. With patient participation, we will move research faster though. That will be the path to a “cure.”

    2. Terry says:

      I had a feeling that eventually, doctors would start to question whether the patients that blog and/or post messages online are not a true representative sampling of all of the autoimmune disease communities out there, and this is very disconcerting. First, let me start by saying that I AGREE that there are probably a heck of a lot more patients discussing their conditions online who are not happy with the current state of their health condition than there are those who are happy. If I were feeling better, I would not be quite so confined to the home, and I would not feel the need or have the drive to constantly scour the web for more information about my condition and ways to minimize its disruption on my life.
      What worries me, though, is that we are going to be categorized as the patients who lack the proper perspective, and/or who are histrionic, and that therefore our comments and opinions mean less, or don’t matter at all.
      Another disturbing trend is the number of doctors and other medical professionals anonymously blogging and using their blogs as a means to trash patients. There is one anonymous physician who recently wrote a blog which said that anyone — ANYONE — with a fibro diagnosis falls into the “crazy people” category (his/her exact words, not mine). He/she specifically applied the “crazy people” definition to those who have fibro secondary to RA (this example was specifically addressed by the physician blogger in the comments section related to that post). I have no doubt that physicians have a tough job, and often deal with difficult patients, but to be so categorically dismissive and prejudiced against an entire class of patients is just, for lack of a better word, crazy. But that’s the reality we need to understand, because it is the world in which we live, and I think it explains a lot as to why it is so hard to get people, including medical professionals, to hear our message.

      • I have also read such posts. And kept screenshots of some of them, if they are rheumatolgy related, as you describe. They are disgusting. We keep the discussion here to a higher level than that, so I didn’t even mention any of that with this post. But you’re right that this is part of the intimidation that could partly be a result of fear of change on their part.

        The facts all over this site speak for themselves in two ways. One, the articles are well researched and documented, using almost exclusively “THEIR” data.
        And Two, the comments pages provide an enormous sample that is not one-sided, with patients of varied experiences and backgrounds which seems to follow the patterns of other large population studies. So I do not think we need to give ground here. Our population is enormous & that is too many to be an aberation.

      • Leslie says:

        Terry, Fibro is still a very controverial diagnosis even amoung MDs, surprisingly enough. I see a kidney doctor a couple of times a year for IGAN, another autoimmune disease that has for me been fortunately pretty benign so far, and saw him when I first began to experience my first RA symptoms with sore knees, swollen ankles and swelling in my hands. He was at first concerned that the swelling in my ankles and hands might indicate a reduced kidney function but that wasn’t the case and the pain in the joints prompted him to suggest that I had some sort of inflammatory arthritis and needed to see a rheumatologist. I already had an appointment lined up and told him so. Six months later, I saw him again and when he asked about the arthritis I told him that the rheumatologist had diagnosed osteoarthritis and fibromyalgia. He said he didn’t think fibro was a real disease and that I didn’t have it and maybe I needed a better rheumatologist. He was right on both counts but I’m very sure that fibro is a real disease and dismissing like that is just stunning coming from someone I know to be an excellent kidney doctor. I don’t think he would tell me I was crazy or dismiss my pain, but he did dismiss the diagnosis out of hand.

        • There is an FMS tag on this site w/ a few articles. With the vantage point of having read tens of thousands of patient stories like the one I just read from Leslie, I have formed a pretty strong opinion that I can summarize this way: Most of the time, this label of fibromyalgia syndrome, a diagnosis of exclusion, is given without actually going thru the process of exclusion. And my greatest concern with that is that people are given symptom medications (that’s all there is since there is no identified FMS disease process), when they actually have a condition which needs medical attention and treatment. Usually, that is OA, inflammatory arthritis, or degenerative disk disease or something else. Covering up symptoms w/ the meds given for the FMS diagnosis leave an underlying problem untreated. This will be very difficult to remedy because now that there are drugs approved for this diagnosis, the diagnosis is made very frequently & the patient is given a “solution” of a prescription routinely. Obviously, the process of exclusion – overturning all of the other things it could be from MS to subtle inflammation is much more difficult and expensive. And finally, what makes it very difficult to improve this confusing situation is that there are lobbies for FMS that are in the hundreds of millions – more than RA has had throughout all of time added together.
          As far as RA patients, virtually all of the symptoms described now as FMS symptoms have been historically called RA symptoms. So a person w/ RA doesn’t have “unexplained” pain; RA does explain it. RA does affect soft tissues as all history has documented; this is the cause of the tendon damage that leads to many common RA deformities.
          I don’t think doctors explain it well if they say they don’t “believe” in FMS. They should always say: I BELIEVE THE PATIENT ABOUT THE SYMPTOMS. I DON’T BELIEVE IT HELPS THE PATIENT TO LABEL IT WITH A DIAGNOSIS OF EXCLUSION BEFORE EXCLUDING EVERYTHING KNOWN AND TREATABLE THAT IT MIGHT BE. But they are being a bit lazy and say, I don’t believe in FMS, when they usually mean, “Let’s get to the bottom of the cause of the symptoms.”

        • Terry says:

          I know it’s still controversial amongst doctors. But the problem is the attitude of the anonymous blogging doctor that people with a fibro diagnosis are “crazy.” Now I’m not suggesting that every person on the planet with a fibro diagnosis isn’t faking it. I’m sure some are. But on the flip side I find it hard to believe that everyone with a fibro diagnosis is crazy. Especially those who have a recognized, non-controversial diagnosis such as RA to go along with it. Physicians: please explain to me how it is that it is medically acceptable for a patient to have an autoimmune disease, which by definition causes systemic inflammation, and if they have inflammation in their joints “only,” they are not crazy, but if for whatever reason they also complain of pain in their muscles, they are? If you don’t like the label of fibro for these patients, then change the label, or look beyond the label to see if perhaps the muscle pain is from the RA itself, or perhaps from polymyositis or some other inflammatory disease that affects the muscles. But don’t discriminate against the patient.
          My fear is that any RA patient who has a physician that shares the view of our friend the anonymous blogging doctor, will never get proper care from that physician. They will just be viewed with skepticism and disdain.
          And, for the record, I have never been diagnosed with fibro. But I know others with the condition, and the psychological damage their physicians, families and friends inflict on them is far crueler than the condition from which they suffer. It infuriates me, and should infuriate us all.

    3. Janet Graham says:

      Kelly, I cannot thank you enough for all that you do. Not just with this website and RPF, but the knowledge and community I have found online thru your twitter family. While I have a very supportive family, including a sister and a brother with RA,(both a curse and a blessing) and a great team of doctors (3rd times a charm). This community is by far the most valuable of resources.

    4. Rebecca says:

      Psssssst, the link to the page about changing the name of the disease is currently linked to a page in the admin area of WordPress that can’t be accessed unless you’re an admin. Really interested to read more about this!

    5. Helen says:

      Hello,

      Congratulations for continuing to represent people who have rheumatoid disease very well. 1 in 100 is an impressive number and I know because of Kelly’s intelligence, dedication and high standards, we will all continue to benefit from RA Warrior’s efforts.

      I was struck with this disease while studying for my doctorate. I seem to have the severe, aggressive form. I have spent many hours reading research articles published in medical journals to improve my understanding of all things RA. I have sent my most recent finds of journal articles to the Rheumatoid Patient Foundation Board. I’ve also posted youtube links to a three-part video series that is the best information I’ve seen on describing RA, treatments, and therapies that can be shared with family and friends.

      Once again Kelly, thank you is not sufficient for expressing our gratitude to you and all who volunteer their time to help people who have rheumatoid disease.

    6. Marcella says:

      I was stunned to see a picture of my car on this website. My Smart car has allowed me so much freedom, it is almost impossible to describe.

      A year ago, I was almost completely bedridden, incontinent, almost unable to walk across a room. I have spent the past year gaining access to medical care, drugs and some PT thru this site. I have so much to thank you for, Kelly!

      It no longer takes me 30 minutes to get to a toilet 6 feet away from my bed. I am fortunate to live in a county which has an exceptional health plan for indigent, uninsured citizens. My current health plan involves Humira, which has given me a renewed lease on life. I can walk with a cane!

      I breathe easier every day knowing there are others out there living the life I live. I’m fighting right now to be able to continue my drug treatment under Medicaid until Medicare will eventually cover my situation. It is difficult to describe a disease people cannot SEE. I am ‘drunk’, ‘lazy’, ‘stupid’, etc. There is no way to describe RAD. I do not wish to have anyone experience this disease. BUT, I do wish others would spend an hour or a day with RAD as I experience it.

      Just so they could understand what being able to drive a Smart car, get to a dr, get my medications, get fresh food, get that SSDI money means.

      That Smart car has meant FREEDOM to me.

      And – many new friends in parking lots!

    7. e-Patient Dave says:

      Well, good for you, for being both transparent and rigorous! Too often mainstream scientists fail that double test.

      I wonder if your detractors would like to engage in discussion with the MDs on your advisory board. I mean that honestly – I don’t do snotty remarks, unless they have a grin after them, which this doesn’t.

      ANY good scientist with integrity (and I mean “ANY” absolutely) is 100% open to scrutiny of their methods, their reasoning, everything, and ALWAYS open to a new view when new information comes to light.

      The skepticism you describe, though, sounds like “This just can’t be true, given my view of the world, so let me see what rationalization I can come up with.” First they said “You’re not real, can’t be.” Then they said “Well, okay, you’re unique – others aren’t like you.” Then when all these people showed up here who ARE like you, the next rationalization sets in: “Well, ANY group that shows up and doesn’t match my view must ALL be due to some sort of selection bias.”

      If it’s any comfort, the same thing happened with me – “Your story can’t be true,” “Okay it’s true but you’re an oddball,” “Okay there are others, but only college graduates,” “Okay there are others, but only in the US”… and now we have e-patients in Sweden, Spain, France, Holland, UK, Greece, etc etc etc.

      The e-Patient White Paper has even been translated into Spanish (a year ago) and work has just begun on French.

      I encourage my scientifically trained friends (in all roles) to keep their minds open. It’s what you were trained to do, way back in grade school, remember? PRESENT your concerns, with respect, and always be open to scrutiny, critique, dialog.

      And never, ever rely on “Well I have this degree and you don’t,” or you’re praying to a bogus god.

    8. Dear Kelly,
      Having read your recent blog, and having made the assumption perhaps that I am the physician you refer to in the piece, it seems obvious to me that I have offended you in some way by my tweet(s) this week.
      I tweeted a general question seeking information to help me understand what makes people more likely to be present, tweet, blog and post messages on Facebook about their health. It seems my posing the question may have given you the impression that I was in some way making a judgement about your good work or attempting to undermine your valuable contribution to those with rheumatoid arthritis. That was never my intention but in retrospect, I can see how it might have given you that impression.
      I also received a message today from @epatientdave on Twitter who suggests that perhaps there is some sort of history to all of this. Implicit in his message to me was that I was somehow skeptical about your work. I’m not sure how either of you got the idea but its simply not true.
      I always thought that we had an amicable, co-operative and respectful working relationship and that despite our different perspectives, that we are both trying to do the similar things for the RA community.
      I wish you well with all of your endeavours and apologies if I have offended you or anyone in your community.
      Best Wishes,
      Ronan Kavanagh

      • Ronan,
        Thank you and of course I accept your apology. Several people spoke to me independently about their perceptions of your repeated efforts on Twitter over the past week and how that fit in with other comments they had noticed in the past regarding your view of rheumatology patient opinions, not limited to Rheumatoid Disease. Some patients might feel intimidated and not share that perception with you, but spoke to me.

        I do usually prefer to respond to the substantive issues within a blog post where I can carefully document my sources and I will continue to do so because there is much more that can be done to demonstrate the validity of the patients’ case made in this blogpost. However your comment does not seem to address the several substantive points of this post which are really the important issue. The statements you made this week (see below) were similar to your comments last year in Chicago that you thought the RPF used information gathered via social media to create our publications (two posters) for the American College of Rheumatology Scientific Meeting to create an impression that more patients do not respond to treatment. However, the Resources Section on those posters quotes numerous published studies, as do all of the news articles and most of the blogs on this site. The point of this blogpost is that the literature from within the profession itself is enough to demonstrate all of the things that our patients illustrate here. I truly wish that you would go back and read the past 200 comments that took place on this blog during the very same days that you were posting repeatedly on Twitter that you suspected patients in the community are presenting a biased view.

        This blogpost summarizes we can defend the patients’ case with evidence from within the profession. I do not agree with the statements or insinuations of your Tweets over this week (see below). We can and will present evidence about that in future posts. But I ask you now to consider two things:
        1) The size of our sample. I have literally had hundreds of thousands of points of contact with tens of thousands of patients. I know the names and stories of many of them. The 20,000 comments here are a fraction of what I’ve been exposed to working 60-80 hours most weeks for the past 3.5 years, speaking with patients, caregivers, and researchers, and reading research articles. Our sample is not something to dismiss, as Dave points out above.
        2) Our community has a long well-earned reputation for being one of the most positive, constructive health communities online. We have hundreds of screenshots, statistics, and glowing reviews over the past 3 years that say so. The insinuation that it is a negative community is untrue and our work won’t be discredited by sweeping accusations of negativity since they are easily disproved.

        My guess is that any patient reading this would think I’m remiss if I leave out this point, however obvious: It is the disease that is negative. These are negative facts:
        Out of the blue, it strikes down healthy active people during childhood or the prime of life. It is progressive and destructive. Remission is extremely rare (6% according to huge studies). A small minority of patients have an excellent (ACR70) response to treatment. 70% of patients require daily pain meds, 91% experience fatigue daily or often, 48% experience fever daily or often, 68% feel a need to conceal pain, 67% experience zero pain-free days per month, and 28% report moderate to severe pain at least 20 days per month. It is a negative experience to have this disease. However, studies show 96% of patients who are judged by rheumatologists to be in remission are shown by mri or msus to have painful and damaging inflamation. So yes, this disease has earned its reputation as an “invisible illness.” And over the hundreds of years of inadequate tools to measure disease activity, there has grown a gulf between the patient perspective and that of doctors. And yet, the people who live with RA tend to become the most compassionate, optimistic, internally strong people I’ve ever seen in 30 years of being part of public ministry work. There are several articles on this site about this phenonmenon that might help you understand this. We know that the vast majority of systemic symptoms are not documented since they are not widely understood to be part of the Rheumatoid Disease, and that there is a documented disparity between patient and rheumatologist assessment of joints as well, and that side effects are vastly under-reported. The vast majority of patients tell us that their rheumatologists do not have an accurate view of how the disease affects their lives. We have had some of the great research doctors in this country tell us they know that very thing in their own words, as well. So, I would like to challenge you to look at the evidence. Perhaps all of your patients who you think are doing very well are not necessarily. Is it possible that if I met your patients and spent time talking with them casually, I might have a different impression of how well they are? They might even tell me what they don’t tell you.

        My final point:
        Almost every patient I’ve ever talked to has told me that our community is the only place they have ever been able to safely express their symptoms without fear of condemnation for being negative, whiney, or hypochondriacal. I will vigorously protect and defend that safe environment for patients. Patients are better able to cope and manage when they know they are understood by someone. It lessens pressure on their family and better equips them to share with others when they are ready. It is unfair that patients who endure such a daily debilitating painful invisible disease with so little support and no “public awareness” of what they endure finally find a way to help one another, and they are criticized. How often I have responded to a man or woman who apolologizes for their reporting negative experiences while asking for help; I say to them, “You are allowed to tell us how it is. We do not think you are whining. We’ve been there. There will be better days, hopefully, but we are here for you today.”

        Ronan, we hold the hands of the family members of those who are hospitalized and some who have died. I would love to have you read through more of this site and the comments pages to confirm all I’ve said here. We’d welcome the prospect of working together with you toward improving patients’ lives. I hope you will consider it.

        For the benefit of those who are not on Twitter:
        You Tweeted to me yesterday that you made no statements about us, only questions. The questions, of course do include obvious insinuations, especially when repeated over and over: “Any data that pts w/ negative outcomes are more likely to use social media for healthcare empowerment/sharing?”
        But there were also statements such as “I am often upset by what I read on socmed and need to understand why”; “but most of us who are well tend not contribute to socmed conversation much &blog about our wellness”; “That’s a fair point. It is an impression I have which there’s no evidence. It’s possible though. Isn’t it?”; “my patients are often scared by what they read and hear in discussion forums and Socmed. Im trying to Explore why.”

    9. Laurie says:

      Well said, Kelly! I know every time I go to the Rheumatologist and fill out the little survey asking what I can and cannot do, nowhere does it ask me how many pain free days I had, if I have low grade fevers, fatigue….it’s all joint related. I have documented RA related cardiac and pulmonary problems, but the rheumatologist defers them to the other specialists, even my orthopedic surgeon, who is replacing my bone on bone knee next month. Funny thing is, I had to get a prescription for my knee xray from my primary care doc because the rheumey would not give me one. Seems all she is interested in is prescribing medications that are infused in her infusion room, or dexa scans done in her office. Gets very frustrating.

      • I think that the more global understanding of the rheumatoid disease is so recent that they were not taught about it. Many things have been documented in recent years that patients have experienced and were previously believed to be “rare” such as cardiovascular or lung or eye involvement or constitutional symptoms.
        The entire appointment is often taken by prescribing. I’m glad that you have some kind of survey given to you – I’ve never seen one in a rheum office – as most of our patients tell us that just like the studies have shown, there are few who get joint exams or patient questionnaires. But what you said about the knee x-ray is exactly the kind of thing I hear all the time that makes me driven to change this. Don’t you work in healthcare, Laurie? That’s terrible.

        • Laurie says:

          Kelly, I have been an RN for 34 years, working 7 years in Ortho/neuro ICU and the last 27 years in all areas of OB, the last 15 years primarily in nursery.
          I know I do a lot of online reading on my health issues. When I went out on Disablity in Jan. 2011 with the cardiac and respiratory issues, I think I spent 3-4 hours every day trying to diagnose myself along with the doctors. I was shuffled from my primary doc to a pulmonologist, hematologist, cardiologist, allergist, endocrinologist, now I have appointments with a neurologist for hand tremors, a dermatologist for some odd skin problems and the orthopedic surgeon will give me a new Knee in September. I have gone to each doctor with a list of questions. Doctors don’t like to answer questions…they don’t have time. They may think I am a pest..but over the years I have learned to stand up to them. Ordering prescriptions is a battle. I have a set income and I only want generic drugs, except for my Enbrel. The doctors are so swayed by drug reps and don’t want to use the generics. Every time I go to a doctor they try to change my meds to the pricey new meds, even tho the old meds are controlling my conditions. I don’t think that any of them communicate with each other, except for the 3 doctors that are online with the hospital and therefore are linked.
          I also take pictures of my flaring joints, rashes and even video of me getting up and down out of a chair, and I take it with me to appointments on my laptop. I am applying for SSDI, and my rheumatologist asked me if their office initiated it….because she doesn’t think I am that bad with my joints…but it’s the peripheral conditions of RA that are making me sick. I have nodules in my heart, near my natural pacemaker. The cardiologist said the next step would be having a cardiac cath and lasering my heart nodule and the sinus that originates my heartbeat, and implanting a pacemaker and defibrillator. Thank God my meds are working, I don’t want that procedure. having RA alone is scary and painful, but the collateral damage is worse.
          What I learned in the past 10 years with RA….be your own advocate, empower yourself with knowledge and ask questions always. No doctor cares about your health more than you do!

    10. Lisa says:

      Ok, I am one of those lucky patients that it is in clinical remission. I’ve gone back to work doing what I enjoy.
      As I sit and post this my left ankle hurts a bit, along with my right shoulder and a few joints in my right hand. The pain is mild and very ignorable. But I haven’t forgotten what my RA felt like when it was out of control- and I haven’t forgotten that no one can tell me if these drugs will keep this rotten disease at bay for the next week, month, year, or 20 years.
      Because of the information and links that I found on this blog- I was able to make informed decisions about my treatment. I am one of the many ‘feeling good’ patients that come here.
      I still have many questions about RA- some of the biggest are “why do doctors seem to think methotrexate works so well when I haven’t actually read a single post from an RA patient that ‘feels great’ on it?” and “why do doctors wait THREE MONTHS or longer before stepping up treatment from non biologic dmards while patients are having their lives destroyed?” and “why is mtx the ‘gold standard’ that everything else is tested against when it doesn’t work that great to begin with?”
      I’m on an anti tnf, mtx, and sulfasalazine. I know that this is as good as it’s going to get, plus there isn’t much more to do until this biologic (my 2nd) starts to fail.
      Doctors… RA hurts, it is a pain that you cannot imagine unless you have it. Patients aren’t here because they are the rarity that is unresponsive…. we’re here because it still hurts and most of us are not getting enough relief!

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