It seemed that changing the name of a disease is a decision that’s not in the realm of patients. We can’t do that. It’s a job for organizations. With money. Who already control things. Which are not working well for patients… hm.

What changed my mind?

1) You did.

Spending > 60 hours a week communicating with other people with Rheumatoid disease impacted converted me.

Without my encouragement, people continued to press the idea that the name change is necessary. There’s no way I could count how many people have told me that they see a name change as a key part of the awareness solution. I’m certain it’s a vast majority.

For a smile, click to see Nancy and I discussing how Rheumatoid Arthritis could become Rheumatoid Autoimmune Disease – and my talking with Tanya and Valeska about creating a foundation for Rheumatoid that would be the RA foundation people have dreamed of  – and a few days later, Julie encouraging people to use RAD instead of RA.

2) The facts convinced me.

The fact is that Rheumatoid is not a type of arthritis. Arthritis is one symptom of Rheumatoid disease.

As I objectively studied the problem, I pulled apart threads like tangled yarn. Examining the origins of the confusion about Rheumatoid disease leads to clear conclusions about what must be done to correct it. The word “arthritis” is one unambiguous thread. My learning process included writing > 600 articles for this site and other publications. For a quick overview, click here to see the list of 57 articles labeled Rheumatoid Arthritis Awareness.

3) An RA / RAD foundation: the Rheumatoid Patient Foundation.

A few say we must first spend our energy convincing other organizations that they must change their ideals or goals to align with those of Rheumatoid patients and give us what we need. Do people with other conditions or causes wait to be given whatever change they need? No, they demand it.

A year ago, we created the Rheumatoid Patient Foundation which represents Rheumatoid patients themselves. Momentum was tremendous during our first year and people are eagerly telling us they want to help more! That support will only grow as people learn of the tremendous plans the Board of Directors has for the coming year. You are wanted and welcome to join us! Click here to read how to play a part right now!

More support for the name change of Rheumatoid Arthritis

While I could list links to comments, and quote emails and blogs advocating the name change all day long, I urge you to read about a rheumatologist’s plea to change the name of RA, Response to An Identity Crisis for RA by Dr. R. Franklin Adams. OK, here’s just one more remark supporting changing RA to RAD from e-Patient Dave deBronkart with an important point of grammar!

What’s next for RAD?

The RPF is bringing fantastic ways to make impact with the name change and for you to help make a difference! Please follow the RPF now by clicking here and here so you will not miss anything! We can all participate in creating the awareness of Rheumatoid Autoimmune Disease / Rheumatoid Arthritis that we’ve all longed for. You’ll be able to join in incredible events coming up including a video contest, RAD petition, and more!

Recommended reading:

• Hear My RA Interview on KISS FM!
• What Can We Do About the Rheumatoid Arthritis Awareness Problem?
• Woman’s Day Rheumatoid Arthritis Article: A Video Appeal
• Use the RA Info button for accurate awareness: Rheumatoid Arthritis (RA) Information
• Rheumatoid Arthritis Natural Treatment: The Beachcomber Article

This month I’ve been more sleepy and fatigued than usual. It might be recovery from traveling the last few months. Or it could be this little thing called RA.

Whether it’s due the year’s end or fatigue, sometimes I sit in my rocker and gaze into space. Thinking about all the things that need to be done for patients. And making sure people can find more than the pickles in their rheum care.

I was amazed that several comments came in yesterday that served as specific reminders of why we’re here – all common themes on the site, demonstrating the concerns we address:

1. Feeling bad about being in so much pain with a spouse who does not understand. “I have felt broken and scared and as if i was the only one with this disease, with a husband that does not understand and thinks i am ‘wimpy’ and lazy and that i complain too much. Thank you.”
2. If we don’t speak up, the only voice that the public – or doctors hear – is the drug companies’. “The waiting room is full of ‘RA Awareness’ booklets, all published it seems by pharmaceutical companies. All of them show pictures of healthy active women – working, gardening, playing with the dog. All appear to have oodles of energy and joie de vivre, while I am sitting in my doctor’s office wondering if I have the energy to simply keep breathing.”
3. Delayed diagnosis & frustrated that symptoms are not understood. “Sometimes I wish my health-care-providers also had RA so they’d be able to relate alot better to what I’m going through.”
4. Losing a loved one to Rheumatoid disease. “I think it’s wonderful that u developed a site like this for people to research this terrible disease. My dad passed away Dec 11, 2011 at the age of 51. He had battle RA since he was 18yrs old and RA is what caused him to pass…”
5. Unwelcome life change. “I reduced my schedule to teaching kindergarten just half-time. RA has made me feel like I was totally inadequate. By the time my afternoon class was starting I was in so much pain I couldn’t think straight, much less TEACH 25 5 year-old-busy-children. It broke my heart. So, I went half time. My husband is furious. My children don’t get new clothes for school. It sucks. But I am much more productive and successful at school and at home. It’s worth the money-loss.”
6. Frequent participation of family members. “One thing we do now that my husband has RA is put all of his presents and the ones he wraps in gift bags. It makes opening presents less painful and hopefully more enjoyable.”

I know I’m one girl with a big voice, but I’m still just one girl. I always say, Together we can do more. That’s why we created the Rheumatoid Patient Foundation to accomplish the things that patients say they need. If you’ve ever wanted to help, please click here and read about what you can do right now!

Postblog: Yes, it was hot enough to wear a tanktop at Christmastime. And my daughter took an unauthorized pic of me gazing with fever and dirty hair. But, hey, it’s real.

Recommended reading

• “Fine Thanks, and You?” and 5 More Stupid Things I Say
• Success news from the Rheumatoid Patient Foundation – & how you can help!
• Your Comments Are a Special Blog in Themselves

Pain is one of the most important symptoms of Rheumatoid Arthritis and many other conditions. Pain is the most obviously significant signal that something is wrong. However, pain is also the most difficult symptom to measure.

Need for a pain scale

Since pain is such an important indicator that something is “wrong,” we ought to find better ways to measure pain and more meaningful ways to relate pain to disease activity. Obviously, pain is mostly invisible. I say mostly because pain can be seen on the face with a furrowed brow or winced eyes, especially in people who strive to be quiet about their pain.

The two challenges to creating a suitable pain scale:

1. Helping people to quantify their pain in a way that is as objective as possible so that it’s meaningful to care-givers (personal and professional).
2. Having a trusted scale that allows care-givers to take patients at their word.

Looking over the inadequate pain scale examples from the NIH Pain Consortium is discouraging; something better is obviously needed.

Meaningfulness of a pain scale

For healthcare professionals, the ultimate challenge is to determine the meaningfulness of pain. The pain scale is only a means to this understanding. A good doctor or nurse needs to know how a patient’s pain is associated with disease activity. The pain scale can only help the provider to discern disease activity as he appreciates what a patient’s pain is like and deduces what the origin of it may be.

“Pain follows the same pattern of development as other parameters of disease activity in groups of patients with RA,” Assessment of Pain in Rheumatic Diseases.

Pain scale relatability

The provider has another difficulty that has nothing to do with a particular patient or pain scale used: His own experience or lack of experience with pain is the only means that he has to relate to pain. His ability to comprehend various levels of pain is helped or hindered by his experiences.

According to Callahan et al, “Pain is a most important indicator of clinical status in rheumatoid arthritis (RA). Inquiry about pain is included in every encounter of RA patients with a health professional; however, the patient’s response to such inquiry is generally regarded as ‘subjective.’”

I’ve seen pain scales on the wall at doctors’ offices, but I’ve never been asked to use a pain scale. Does that mean the doctors I’ve seen haven’t experienced much pain?

The problem of pain tolerance

Another difficulty with measuring pain is that people who live with severe pain such as Rheumatoid Arthritis tend to adapt to it. They increase their tolerance to pain out of necessity. This is the reason that people living with RA often complain that pain scales “don’t work because they don’t go high enough.” RA pain is often starts out as the most severe pain a person has ever experienced, so they might rate it with a high number. But, then, if pain worsens or occurs in numerous joints at a time, they wish for a bigger number. Consequently, they adapt their personal pain threshold and now rate the pain which was previously a “9” as a “7” in order to be sure to fit all of their pain onto the scale. RA patients tend to continually increase their pain tolerance in this way.

Can we make pain scales make sense?

What would be your model pain scale? Please post about it in the comments or on your own blog. Let’s make this our next great blog carnival! Just send me an email at Kelly @ rawarrior.com with the link to your blog post about pain scales and I’ll post them all here in two weeks (December 28th). Let’s see what our imaginations can create! Please put “CARNIVAL” in the subject of your email.

Pain scale articles worth a look:

1. Stanford Pain Visual Numeric scale from 1-10.
2. The Comparative Pain Scale has detailed categories, but this is not specific to rheumatology.
3. MIT’s Technology Review published An Objective Way to Measure Pain complete with brain images.

Further reading on measuring pain

• Does Rheumatoid Arthritis Pain Really Hurt That Much?
• Some Rheumatologists Don’t Understand How Much It Hurts
• Do Rheumatoid Arthritis Patients Have a Low Pain Threshold?
• IOM Pain Report Relieving Pain in America Gets Mixed Reviews
• The Hypochondria of RA Pain: Do I Smell an Elephant?
• “Fine Thanks, and You?” and 5 More Stupid Things I Say

Click here for more blog carnival posts.

What happens at the American College of Rheumatology Scientific Meeting?

“The ACR/ARHP Annual Scientific Meeting will be held November 4 – 9 in Chicago, IL, and is the must-attend event for anyone involved in research or delivery of rheumatologic care or services. Innovative sessions, ground breaking scientific abstracts, education developed based on practice gaps, the return of popular session formats, as well as hands-on skill training sessions are just some of the highlights,” ACR Annual Scientific Meeting page.

Why are patients interested?

In some ways, patients can be compared to a commodity that is traded at an ACR meeting. Without patients, there would not be rheumatology. Without patients, there would not be expensive pharmaceutical medications. Patients are the reason clinical trials and clinical practice training is needed.

Patients are interested in knowing what is being learned about “rheumatologic care or services.”  They want to know about the innovations and ground breaking science that can address practice and treatment gaps. For patients, those represent changes in the ways that their needs for adequate diagnosis and treatment may be met.

It’s as simple as that.

I will be glad about any information or hope that I can provide to patients from what I learn here.

Recommended reading

• IOM Pain Report Relieving Pain in America Gets Mixed Reviews
• Dear Bridget Duffy from a Rheumatoid Arthritis Patient
• ACR REF Rheum Research & Courage That Won’t Back Down

In a recent example, I went through three rounds of explanations about why I could not do something. Granted, the other party worked for some large company far away from me. However, they were contacting me because of the work through my blog, so they knew up front I had RA. And if they wanted to, they could easily have learned on this site what that means.

The same old wall

In my fourth blog post ever, I wrote about The Wall. It was an explanation to a friend about why I’d disclose about my RA in a blog. I described the typical reactions to telling someone about RA. There is often this wall of denial that we are sick or disabled at all. There is an almost rude assumption that we are actually better now even when we say we are not.

Let’s try an experiment:

People expect you to take a long walk through gravel and then stand through a meeting. They lead you up long flights of stairs. They don’t offer you their chair. They invite you to a meeting at 0700. They don’t open heavy doors.

Many readers just read that list waiting for a punch line – because they don’t have RA.

However, readers who have RA heard something different: OUCH.

Bluntness is the only solution

Unless you live with someone who has RA or have read this blog frequently (including the comments pages), you have no idea.

A short list to help you out:

• It’s a problem when my care-giver is seated too far away. I need help.
• In airports, I use wheelchairs and assistance for the disabled.
• In restaurants, I look for the easiest thing to cut because at home I eat with fingers more.

3 Things I wasn’t asked, but you need to know

1. RA affects people differently, having flares of various lengths. Mine has lasted almost 6 years.
2. RA treatments don’t work on everyone. I’m part of the lucky “non-responding” 1/3.
3. RA can affect many or few joints. All of mine are affected, including ribs. It hurts to breathe.

Dear Person with RA:

We are different in some ways and the same in others. I’m hoping I’ll have better luck being more specific about how RA is affecting me personally. What would your list be like? Would it help explain your RA?

Dear Person not living with RA:

Please don’t assume you understand how well we are or what our abilities may be. Most of our symptoms, from joint pain to heart trouble, are invisible to you.

Postblog: By the way, that early post about the wall contained the words that became my mission statement. I wrote it off the top of my head, sitting watching my baby play. I’ve since seen it elsewhere, in places I had never visited. If it sounds familiar, you heard it here first.

Have you been through our RA 101?
Clear answers about RA in only seconds!

Recommended reading:

• The Tug of War of RA Awareness: Privacy of Pain & Agony of Disclosure
• Easier Said Than Done: Simple Things That Seem Impossible
• Managing Rheumatoid Arthritis: Transparency and the Wall

Common threads and similarities in Rheumatoid Arthritis

As Bob West, our geneticist friend has hinted, there may be some different strains of RA. And we know that we are all different genetically, which affects how our bodies respond to treatments. But even with the diagnosis limitations that we have today, we who live with the disease find common threads.

What is today called Rheumatoid Arthritis is recognizable to us. In a public place, we notice RA in total strangers who don’t look sick because we recognize tell-tale signs. We meet a new friend who has RA and it is like we have found a long lost sister and talk for hours. (I’m so thankful for my #rheum mates it’s hard to put into words…)

I’d like to point out that there are many aspects of this Rheumatoid disease that we who interact in community understand to be common to the disease which are not reflected in academic literature. For example, we hear many had first symptoms in their feet, but hands are always stated to be the main point. Hand joints are given preference in diagnosis. Mystifying. That’s one of the reasons I built this site. And it’s the reason I’ve been so adamant that the patients’ voices must be heard.

Things that are said in our community fit nicely with the little that has been written about RA that comes directly from actual patients. We never read those books before RA diagnosis, yet the similar experiences are uncanny.

Two examples of common RA experiences in literature:

1. From Out of Joint by Mary Felstiner: “In one decade I’ve lost my guarantee of good health, lost fluidity, lost ease in the physical acts of parenting, lost a fair practice of equal tasks, lost nouns like energy and swiftness, lost my lifelong singing voice and even a speaking voice free of crackles and pops, lost my elbow grease for vacuuming and yard work and tearing full speed down a swimming lane, lost any assurance I could run from threats, lost my trust in in feminist to name my woes, lost my reliance on medicine and also in alternatives, lost my remission, lost my pregnancy. Amid all the losses what can never be found again is my old sense that each loss must be a fluke,” page 37.
2. From a PhD nursing thesis by Dianne Roy, The Everyday Always-Thereness of Living with Rheumatoid Arthritis: “They are accepting the thrownness of their situations and living with the balance of what is possible today and what is not possible. The strength in dread is in accentuating the positive possibilities of now, of appreciating what can be done and not dwelling in those things that cannot be done,” page 174.

I’ve seen it happen a thousand times on this blog. Or someone sends me a letter asking how I know their life so well. The answer is that I’ve lived it.

Have you ever had one of those experiences? What are the things that make us similar? I’ll start the list and you can finish it.

1. Making continual adjustments to deal with disability or pain.
2. Hiding the severity of pain that would make others faint.
3. Having family members or neighbors or employers who don’t think we’re very sick because our disease was misnamed.
4. Having a heroic optimism that might make Pollyanna look cranky.
5. Being told by a doctor that our disease pattern is not typical or that we look ok.
6. Swelling without pain or vice versa.
7. Having to take medication that scares us.
8.  

Recommended reading

• RA Reality Versus “The Lie”
• Fighting Rheumatoid Arthritis Depression
• How Rheumatoid Arthritis Pain Affects Women’s Lives

1. Celebrities have been diagnosed with RA (and PsA) and that didn’t help.
2. “Sjögren’s syndrome” sounds like a disease; there’s no “arthritis” in the name even though joint symptoms occur.
3. The news stories over the last 24 hours prove me out.

Guess what happens if you Google “sjogrens” now? Just like that. The top result is a photo of Venus with a Time article about Venus’ diagnosis. I find it fascinating that they say Sjögren’s is so rare and then explain it by comparing it to lupus (SLE), a disease just as rare. By the way, Elizabeth Cohen on CNN does the same. (Don’t miss this chart from Mayo Clinic showing how common or rare Sjögren’s and other AI diseases are in men and women.)

Why isn’t RA mentioned, when not only is RA similar to Sjögren’s, but also a large percentage of RA patients actually have Sjogren’s syndrome as well? As a matter of fact, half of the time, Sjogren’s occurs with another autoimmune disease, usually RA. Why not explain the rare disease in terms of its common cousin RA, over four times as common as lupus or Sjögren’s?

Because it wouldn’t do any good. No one knows what Rheumatoid Arthritis is. Isn’t it that thing that everyone has a touch of?

Do we really need our own Venus Williams for RA?

There is a lot of concern and awareness for Sjögren’s, lupus, spondylitis and other AI arthritis conditions with organizations with budgets in the millions (or hundreds of millions) of dollars spent on public awareness campaigns, research, and patient outreach. RA has some catching up to do. But we won’t do it by taking some of the sympathy that Venus generously deserves.

Sometimes I hear, “We need a famous person to have RA.” My response is this: we have RA already. Let’s put it on the healthcare map ourselves. Instead of a famous person getting RA, we’ll just make RA famous. We’ll be our own celebrities.

A new normal

I didn’t want to blog about the Venus-Sjögren’s news. And then I watched this interview: “Venus Williams Opens Up on Illness: Tennis star explains Sjogren’s syndrome that made her drop out of U.S. Open” on the ABC News website. I got a bit choked up like I was reading a testimony from someone with RA. Venus said:

• “No matter how hard I trained, I never had stamina…I had fatigue which was really debilitating. It’s not that you have no energy – you just feel beat up.”
• And then she mentioned joint pain and noticing the “changes in shape” of her joints.
• She resolves: “My normal might not be everyone else’s normal, but I feel like now I can get better.”

I remember saying the same thing. I really hope so still. For Venus and for me.

Postblog: After the Venus video, the ABC website auto-plays a video of Dr. Richard Besser explaining more about Sjögren’s syndrome. He says patients can have “a normal lifespan” or “symptoms can be quite debilitating.” This whole thing is curious. She’s such a beautiful woman. Why didn’t anyone say, “But Venus, you don’t look sick”? Maybe because we already know Venus; so we know she’s not a pansy. See what the interviewer says: “You have been an athlete who has never once complained of injury or illness. You let your playing do your talking.”

So Venus is believed – the way my friend Leslie believes me. She believes me more than anyone who doesn’t know me can believe me – because Leslie really knows me. She knew what I was like before RA changed my normal.  

Recommended reading

• What is Sjogren’s Syndrome?
• 20 Facts About Rheumatoid Heart Disease
• Phil Mickelson’s Psoriatic Arthritis

I used their contact link to send in the following Letter to the Editor. I had contacted Dr. Adams to thank him for the article and he suggested I write a Letter to the Editor. Hopefully, they’ll publish my letter.

My Letter to the Editor of The Rheumatologist:

Dear Editors at The Rheumatologist:

Thank you for the article “An Identity Crisis for RA; A few suggestions to bring rheumatic disease the recognition and respect it deserves” by R. Franklin Adams, MD (August 2011).

I’d like to quote the article to underscore the parts I liked best, but I’d quote almost the entire piece. If only the whole article could be condensed onto a t-shirt!

Over the last three years, I’ve written about 600 articles about RA, published on my website and other sites. I’ve read hundreds of news stories, academic articles, and patient blogs. Meanwhile, I’ve received at least 100,000 responses directly from RA patients and lived full-time with the disease myself. What have I discovered?

Being lumped with “arthritis,” RA has no identity. Patients have already dropped the “a” word and begun to refer to RA as Rheumatoid Disease or Rheumatoid Autoimmune Disease. Statistics about mortality rates and research funding are terrible. The problem is as Adams clearly sees it and profoundly states it:

“Who among our citizenry believes that, on any given day in the future, he or she could suddenly wake up with a dozen or so hot, swollen joints radiating intense pain throughout the body, an inflammation which might literally continue for the rest of the individual’s life?…Virtually any day of the week, you find some reference in the media to ‘Avoid arthritis, take vitamins, and exercise!’ How offended our patients with rheumatoid arthritis (RA) must feel when they see this deceptive advertising. It’s inconceivable that patients in this day and age should be made to feel shame or guilt for ‘having allowed’ this devastating disease to happen to their bodies!”

I made very similar statements to ACR Research Education Foundation’s Steve Echard at last year’s annual Scientific Meeting in Atlanta. As I read Dr. Adams’ article, I heard my own words echoed. It seemed like he had read the articles which I’ve written about RA, even this very old one on HCP Live. In reality, Dr. Adams and I had no contact before I called him last week.

Astonishingly, by way of different roads, we have come to the same conclusions: RA is a serious disease that is misunderstood by most people, including many professional people and medical personnel. According to Mayo Clinic research, the lifetime risk of developing RA is 3.6% for women and 1.7% for men. For the sake of RA patients and everyone in society (potential RA patients and their loved ones), change must come now.

Adams mentions key strategies that have also been advocated by patients through the RA Warrior community, especially RA nomenclature issues. I believe the most successful approach will be one that allows patients, researchers, and doctors to combine efforts to attack the problem of RA on every level (both its identity and its cure).

The first non-profit organization for RA was founded earlier this year, the Rheumatoid Patient Foundation (RPF), dedicated to this purpose. With greater public awareness will come appropriate recognition, research funds, and programs to improve the lives of people with RA.

If there is anything that could be more encouraging to me as a friend and advocate of RA patients than to read this article written by a rheumatologist, it is the response of Dr. Adams to the RPF. He indicated that the work of the RPF is welcome and long overdue in the rheumatology nation.

Will you also stand with us? Within a few days as our website is opened, everyone interested in improving the lives of RA patients is welcome to become a member. I hope that many physicians will lend support so that together we can create the groundswell of change that will help us to defeat the monster that we call RA.

Recommended reading

• 3 Reasons Why the Public Image of RA Is So Rosy
• RA Is Not “arthritis”: a PSA on Rheumatoid Arthritis
• Is It Time for Rheumatoid Arthritis Awareness?
• A Patient Foundation for Rheumatoid Arthritis

Patient advocates probably are flies in the ointment, and there would certainly be no flies in a perfect world. But in a perfect world, we wouldn’t be sick. In a perfect world, doctors could comprehend our pain. Treatments would work on every patient. Tests would always tell the truth…

A tug of war between medical evidence and advocates?

Jessie’s post considers the clash between 1) patient advocates who promote exceptional care for all victims of a disease, and 2) the conflicting ideal of reliance upon established scientific evidence by those who try to fairly administer health care policy or health care itself. “In past decades, the aims of advocates have frequently been at cross purposes with those of government officials charged with balancing a national research agenda.” At hand was the US Food and Drug Administration’s withdrawal of its approval for Avastin as treatment of advanced breast cancer and the fever pitch of emotion that came with it.

Did you watch any of the coverage? I agree that media tend to focus on the emotional side of issues like Avastin. Yet, the last comment by Steven Walker made a point that is significant with regard to RA: Sub-types of the disease and genetic differences make one-size-fits-all treatment impossible. Unfortunately, unlike cancer, RA doesn’t even have any of its sub-types classified yet. All RA treatment today is still trial-and-error, though evidence that subtypes do exist has begun to trickle out.

Evidence in the case of the 9/11 workers with cancer

Also in the news are the cancer-patient 9/11 World Trade Center (WTC) responders. Patient groups representing first responders from 9/11/01 are convinced that there have been an abnormally high number of cancers in previously healthy people. Several forums are full of anecdotal evidence. They believe that exposure to toxins such as asbestos in airborne debris contributed to their cancers. However, a committee who manages funds for health care claims of 9/11 WTC responders won’t add cancer to the list of compensated conditions because they don’t have evidence that WTC debris causes cancer.

The list for continued coverage does include asthma, acid reflux, carpel tunnel syndrome, and sleep apnea which some 9/11 cancer patients point out are illnesses which are far less costly to treat than cancer. However, a study has found “very little” evidence that exposure at Ground Zero caused cancer.

Evidence outweighs hunches and sympathies. But is it sufficient?

“‘Insufficient evidence exists at this time to propose a rule to add cancer, or a certain type of cancer,’ to the list of diseases that qualify for aid under the James Zadroga 9/11 Health and Compensation Act, the report said. The report said only one peer-reviewed article was published on the subject in 2009 and two others were based on models to estimate the risk of cancer. ‘These limitations in the exposure assessment literature make scientific analysis of a causal association between exposure and health effects, such as cancer, quite challenging,’ it said” (Associated Press).

There is not enough evidence that the WTC debris caused cancer, but there turns out to be very little evidence period. How often are people exposed to similar events in order that we might study what they cause? One title summed the dilemma perfectly: 9/11 Cancer Study Pits Scientists Against First Responders. At least that’s how it seems.

Evidence is not the same thing as truth

Judgment is always required to decide whether particular evidence pertains to a situation. Data can certainly be incomplete. Or evidence can be misunderstood. Ask any judge.

As science advances and more facts are exposed, positions have to change with them. That’s why we wash our hands to fight infection instead of using leeches. Yet we don’t always know what we don’t know.

If only we could wrap the golden lasso of Wonder Woman around the evidence to make it tell the truth.

Evidence-based rheumatology:  Handle with care

Turning to rheumatology, consider the Pyramid treatment scheme (more recently called the Step-up Approach) used by some rheumatologists who believe that they are either conserving resources for the good of the system or shielding patients from harmful side effects. Treatment is delayed while doctors wait for evidence of permanent damage. But what of the evidence demonstrating that Rheumatoid disease may have a narrow treatment window in which treatment response is more likely, if applied aggressively enough?

Meting out care based upon evidence should require the considerable proof of its validity that we don’t have with RA. I could write all night long about the problems with establishing evidence as it relates to RA diagnosis, treatment, and monitoring of unique patients. In large part, the problem is due to the dearth of research related to actual effects and consequences of the disease in patients. With RA, some evidence is inadequate and its application flawed; there has been little correlation between genetic data, physical symptoms, and blood indicators.

The science train has not yet arrived to rescue RA patients standing at the evidenced-based medicine station. In clinical trials, the best clinicians use the best methods to assess RA, but in typical practice, these are real problems:

• There is no definitive RA test.
• Tests to measure RA activity are inadequate.
• Imaging tests like ultrasound or nuclear bone scans have high error rates because they’re entirely user dependent.
• Patients and doctors frequently appraise disease activity differently.

Evidence-based medicine puts a burden of proof on RA patients that defies logic. How does one prove symptoms such as pain, stiffness, and fatigue? Patients resort to photographing swelling because their word is not sufficient, but photos are sometimes discounted. Rheumatologists like Dr. Ted Pincus who investigate assessment of patient index data and recognize patient outcome measures as scientific evidence become heroes to patients who need accurate assessment and effective treatment to fight a disease that can cause disability or lead to early death.

In the next few years, if purposeful correlations can be established with tests like the new Vectra DA test, they may become significant in RA treatment. On a distant horizon we look forward to targeted therapies. Meanwhile, some doctors borrow principles from endocrinology, where blood tests provide realistic measurements of disease activity or treatment effectiveness. However, blood tests commonly used to measure RA systematically underscore (or overscore) disease activity at a rate over 200%.

Why do I get so many letters from patients like this: “Why are my symptoms worse when my rheumatologist says my labs show the disease is in remission?” The reason is that there aren’t any lab tests that can show any such thing, yet. When it comes to RA, I’m wondering whether “Evidence- based medicine” becomes the “Easy-bake oven” approach (not quite real).

Postblog: As this was being posted, an Arthritis Research and Therapy editorial was published recommending monitoring of immunogenicity to RA treatments. Methods for such monitoring are not yet widely available, but this would represent a good step toward the pertinent use of evidence in RA treatment. Patients often become immune to treatments and some are told their failed treatment response proves they never had RA. Evidence says otherwise.

Recommended reading 

• The Value of Patient Reported Outcome Measures of Rheumatoid Arthritis
• Evidence and Truth: WTF (Where’s the Fact?)
• Patients & Doctors Differ on Assessing Rheumatoid Arthritis Disease Severity
• Rheumatoid Arthritis Test: Some Funny Factors

This week we reached an extraordinary milestone on our Facebook page. Our membership there reached 10,000. I realize that a large percentage of our readers aren’t on Facebook, but I hope they won’t mind our celebrating!

Today, I want to share a story sent in by Canadian reader MomB about a newspaper article on Rheumatoid Arthritis that got her going. Thanks, MomB.

A readers’ take on Rheumatoid Arthritis in the newspaper

By MomB

I’ve read with interest the stories of the newly diagnosed; they reflect my own story in so many ways. We are all in the same boat.

It was interesting to find an RA item in our local newspaper. It scared me, made me mad, and made me feel sorry for the people that can’t get treatment. It also gave a tiny little bit of hope that some focus might be given to RA. I actually made me want to give this guy a hug at one moment.

Worried me: The University and the pharmaceutical company working together.

Made me mad: “Yet there are only 350 rheumatologists in Canada to serve the aging population.”   I am mad because this (once again!) implies that RA is an old person’s disease.

Made me feel sorry: There are only 350 rheumatologists in the whole country, a population of almost 34 million people.  Let’s we do the math (thought that doesn’t tell the whole story). The article says between 1 and 3 percent are afflicted; we’ll use two to be fair and hope my calculator helps me with the math.

That means 680,000 people are currently diagnosed with RA. Okay, let’s divvy those up between 350 rheumatologists… By my math, that gives them 1943 patients a piece.

Let’s take working days in to account. Take off the weekends and the likely 8 weeks of vacation and the public holidays essentially taking 150 days out of the year. That leaves 215 days that the rheumatologists can deal with patients. Well, not really because there are the seminar days and the days they are teaching; but let’s use that number. That means they see 11 patients per day on a consistent basis.  Unfortunately that is not true because people who live in the northern part of our provinces have NO rheumatologists there.  They have to either travel to another city or accept band-aid solutions from their GPs.

(Note from Kelly: I’m not sure how many times per year RA patients are seen in Canada, but it sounds difficult.)

Here’s a little bit of hope: They are focusing on educating the primary care providers so that they can recognize the symptoms earlier and get people referred for early treatment.

And my need to hug him: “With a very quick screening tool they can pick up early inflammatory arthritis and get those patients the treatment they need rather than saying, ‘Oh it’s just arthritis.’”

Important notes:

• Thanks, MomB! Great analysis.
• If you have a blog – any kind – we’d love to add your voice & link to our upcoming blog carnival about pain relief.
• Remember to complete the RPF RA Patient Survey, if you haven’t done that yet! And please repost the link if you know anyone else with RA who still needs to do it.

Recommended reading

• Our RA Onset Stories Matter
• Who Are e-Patients? A Simple Explanation
• Rheumatoid Arthritis News, Vol.5: Men & Mortality, Vitamin D Research, New RA Meds