Thousands of comments on this blog lament the inability of physicians to see and know with certainty the disease activity of their patients. This problem is particularly weighty when we read of how critical early diagnosis and treatment are for this disease to be “controlled.” Musculoskeletal ultrasound (MSUS) is one way to see what’s going on inside joints, one obvious focus of rheumatoid disease activity.

Two Boston doctors wrote a great overview of (MSUS) for the Journal of Musculoskeletal Medicine. They review numerous studies of MSUS, including one which shows that clinical evaluations and disease management plans were each altered 53% of the time after a MSUS in rheumatology patients. A clear reason: “MSUS is more sensitive than other modalities in assessing disease activity; as previously described, positive power Doppler signal in synovial sites has corresponded with histological evidence of vascularity, a marker for inflammation.”

Specific advantages of musculoskeletal ultrasound (MSUS) in rheumatology

1. MSUS is much more sensitive to examine synovial tissue than clinical examinations.
2. MSUS allows dynamic assessment. That means you can change the position of the joint or even evaluate it during movement which may make abnormality more obvious. Motion can be both active and passive, allowing examiners to learn more.
3. MSUS is better for evaluating certain joints. “Because it is multiplanar, US is 3 or 4 times more sensitive than plain radiography for detecting erosions in the metacarpophalangeal (MCP) joints and metatarsophalangeal joints of patients with rheumatoid arthritis (RA), especially the second and fifth MCP joints, which are more accessible to US.”
4. MSUS is done without the radiation of MRI or x-ray.
5. Patients can guide the examiner by describing pain.
6. Numerous joints can be examined; you don’t usually get MRI’s of multiple joints.
7. No waiting is needed if there is MSUS equipment in the office.
8. Other advantages to MSUS over MRI include comfort…
9. convenience…
10. and cost.

However, the great disadvantage of MSUS is its extreme user-dependency. I’ve read that in articles and been told that by several doctors I’ve interviewed. Sadly, we also learned about this first hand. If that disadvantage can be overcome by training, MSUS will be of great value to patients who need to obtain early and accurate diagnosis and treatments.

Recommended reading

• Three-part blog post series on musculoskeletal ultrasound.
• A Paradigm Shift in Rheumatoid Arthritis Disease Activity? Part 2
• Does It Matter Whether Rheumatoid Arthritis Affects DIP Joints?
• Rheumatoid Arthritis Swelling, Take Two
• Click here to see the SonoSite ultrasound video on the sexy post

Biosimilars are pharmaceuticals that are similar to biologics such as Enbrel and Humira, but not chemically identical as with generic drugs. If the unique molecules used to create a biologic (from living proteins) such as Enbrel are not cloned, but carefully imitated, they are considered “biosimilar.” In the U.S., 2009 and 2010 laws provide a pathway for FDA approval of biosimilar products, which could include treatments for Rheumatoid Arthritis. “This pathway is provided in the part of the law known as the Biologics Price Competition and Innovation Act (BPCI Act).  Under the BPCI Act, a biological product may be demonstrated to be ‘biosimilar’ if data show that, among other things, the product is ‘highly similar’ to an already-approved biological product.  Health care professionals and consumers can be assured that FDA will require licensed biosimilar and interchangeable biological products to meet the Agency’s exacting standards of safety and efficacy.” A few biosimilar drugs are already approved in Europe for other conditions (non-rheumatological).

The boldness of biosimilars

As you can guess from the photos, biosimilars were a hot topic at the American College of Rheumatology (ACR) scientific meeting in November. Patients are anxious to see prices drop for rheumatological Biologics. Everyone is anxious to know how similar “similar” will be.

The exhibit pictured belonged to a Korean biosimilar company called Celltrion and featured a biosimilar for infliximab (Remicade). The blindfolded goddess holding scales of justice had a perfectly sculpted body, including quadriceps and feet. Behind her, in a temple structure, a bent victim stood on painfully folded toes holding a candle with gnarled fingers. I’m still trying to figure it all out.

Interesting twist: Enbrel patent extended

Only days after the ACR meeting came the stunning news that Amgen’s patent for Enbrel had been extended by 17 years. The new patent, called “the 182 patent” after its final digits guarantees that biosimilars of Enbrel will not be sold in the U.S. until 2028. According to the New York Times, “Patents now run 20 years from the date of application, to avoid situations like this where an invention gets extended protection because of delays or maneuvers at the patent office. But since this patent was filed before the law changed, it is governed by the old rules and lasts for 17 years from the date of issuance.”

Another twist: Amgen in the biosimilar business

Large pharmaceutical companies like Enbrel’s Amgen join companies like Celltrion in preparing to develop biosimilar products. Over the last month, Amgen has made news with its partnership with Watson as they plan to create biosimilar cancer treatments. “”Biosimilars provide an exciting long-term growth opportunity for Amgen,’ comments the firm’s Robert A. Bradway, president and CEO.”

“Abbreviated” licensure must ensure safety

The law calls for “an abbreviated” process. We’ll see how abbreviated it will be. Will companies be required to conduct clinical trials that are similar to what has been required for the original products?

The U.S. FDA’s page about the biosimilar pathway statutes says, “The Patient Protection and Affordable Care Act (Affordable Care Act), signed into law by President Obama on March 23, 2010, amends the Public Health Service Act (PHS Act) to create an abbreviated licensure pathway for biological products that are demonstrated to be ‘biosimilar’ to or ‘interchangeable’ with an FDA-licensed biological product.” As the actual pathway unfolds in the U.S., consider the approval of Orencia injections last year. Bristol Myers Squibb (BMS) brought the identical molecule in a new method of delivery. The newer injectable Orencia was even produced with the same manufacturing process and location. Yet, BMS was required to prove by phase III clinical trials that the drug had the same safety and effectiveness as intravenous Orencia. If clinical trials are not done as part of the abbreviated process, the first patients who buy the new treatments could effectively be paying to participate in a post-market clinical trial.

Recommended reading

• Rheumatoid Arthritis Rheumors: 2 Mysteries Solved
• The Rheumatoid Arthritis Commercial Saga
• RA News Headlines, Vol. 6: Ibuprofen for Pain, Orencia Shots, New RA test, RA Inflammation Increases CV Risk

With RA, there are a lot of ups and downs. For many people, symptoms wax and wane in a series of flares (increased disease activity) and lulls (decreased disease activity). Personally, I don’t have a lot of ups and downs—or, at least, the ups and downs don’t go too far from my own “baseline” or typical state. However, the past couple months, I have noticed an increase in disease activity in my body: new joints being affected; increased swelling in some joints; increased pain in other joints. I tend to think “oh, it’s not that bad” – but then, I realized I’d have to go in for blood work soon because of an upcoming appointment.

The blood work, among other things, would test the sed rate (or erythrocyte sedimentation rate ESR) which is a marker of inflammation in the body. The test essentially involves putting a blood sample in a tall test tube and measuring how far your red blood cells drop in a one hour period. The greater the inflammation is, the higher the sedimentation rate.

I may sound a little backwards here when I say that I was scared to go in for my lab work because I knew that my sed rate would be high. There are many patients whose symptoms aren’t “revealed” via their blood work and they would love to have a test actually show what they feel. For me, however, the test does not lie. In fact, it sometimes brings more transparency than I would like. I tend to be a little guarded and defensive, still fighting that urge to think that “I’m okay” and “I can do this on my own.” I’m not and I can’t, of course, but I also don’t want to admit that things are getting worse; and, moreover, I don’t want my doctor to think that I need new medicines (that’s what happened last time I got my lab work done on a “bad” day). On the whole, I’m happy with my current treatment; iIt tends to work quite well without any side effects.

I tried to wait for a “good” day to get my blood work done, but with vacation and holidays coming up, I was running out of time, and I wanted to make sure that my doctor had the results before my next appointment. So, I did it. I went in to the lab on Thursday and I assumed I would discuss the results with my doctor at my upcoming appointment early next month. But something unexpected happened. On Friday, less than 24 hours from when I had my blood drawn, the nurse at my rheumatology office called. They never call me. She said they had gotten the results of my blood work (already?!) and that my inflammation was high (surprise, surprise). She sounded concerned and wanted to know if I had been sick or if I was experiencing a flare. My response was something along the lines of, “No, I’m not sick. My symptoms have been a little worse lately…just, you know, my hands and feet…and ankles…and elbows…oh, and knees—yeah, I guess I’ve been flaring lately.” She said the doctor wanted to know if I wanted him to write me a prescription for a 10-day prednisone burst to help with the elevated symptoms. I told her no, but thank you. I wasn’t that bad, and I’d be in to see the doctor very soon anyway.

Then, I wondered just how high my sed rate was – that they actually took the time to call me and make sure I was okay. But wow does that make me hold them in high esteem. They could have just as easily looked at the calendar and said, “Oh, she’s coming in to the office in a few weeks, anyways; we can just talk to her then. I’m sure she can tough it out.” Which, well, that’s the case right now, but what if it wasn’t? What if I really was feeling so badly that I wanted prednisone but was too scared to call and ask for it? The fact that they are concerned on my behalf is why I love my doctor’s office and why I feel like I can really trust my doctor’s opinion. So, when I go in for my appointment, I will be open-minded about his ideas on my treatment plan and how to get me back to feeling better. And, I suppose trust has to work both ways, so I will try my best to be honest and transparent about how I’ve been feeling.

Dana and her rheumatologist did decide to change her treatment. You can follow her story and read lots of good recipes on Dana’s blog, At the Water’s Edge.

Recommended reading

• RA is Tricksy: Wandering by The Two Towers, a fun guest post by Dana
• Normal blood tests are normal too: Blood Tests for Rheumatoid Arthritis, part 2
• Some special moments in Chicago back in November!
• A list of more guest blog posts

Q. What about treating Rheumatoid Arthritis with supplements?

Answer 1:  Rheumatoid disease is more complicated than can be easily explained. Genetic differences in our immune system responses make it even more complicated. That is why there is not a one-size-fits-all treatment for RA, not even a natural one.

Answer 2: What we call Rheumatoid Arthritis is actually a systemic autoimmune disease. So the symptoms you notice such as joint inflammation (pain, stiffness, weakness, tenderness, or redness, etc.) are only symptoms. Treating joint symptoms is not treating the underlying disease. Many supplements with anti-inflammatory properties can be compared to NSAIDs such as ibuprofen (Motrin) or naproxen (Aleve) which may temporarily improve symptoms in some people, but not treat the disease which affects the whole body.

Answer 3: The requirements for testing of supplements sold without prescription are not nearly as rigorous as those of the USFDA. While a pharmaceutical may require up to a billion dollars and a decade of testing to bring a new Rheumatoid Arthritis treatment to market, clinical trials are not required with over the counter supplements. A lack of controlled testing on patients who have your condition means there is less certainty about how the treatment will affect your health.

Answer 4: The ingredients in supplements may be potent, and that might even be the problem. The measuring of ingredients in over the counter supplements is not strictly monitored or standardized so a person cannot always be certain of the dose she is taking. Exact dosing can be critically important when large or regular doses are involved OR when interaction with other medications is possible. Both over-dosing and drug interactions have occurred with supplements because the potency of the active ingredients cannot be precisely predicted.

Answer 5: Unfortunately, most people who promote any treatment for Rheumatoid Arthritis, including natural supplements have something to gain: money. For some reason, it’s popular to criticize pharmaceutical companies for making advertising claims and profits, but makers of supplements are immune from the same criticisms. The claims vitamin companies make in advertising are often outrageous. We need to apply the same healthy suspicion of anyone who wants to sell us something: Can you prove it works? How much do I risk do I take in believing your claim?

Recommended reading

• Funny Rheumatoid Arthritis Remedies
• All 16 articles related to natural treatment of Rheumatoid Arthritis
• Rheumatoid Arthritis Natural Treatment: The Beachcomber Article
• Natural Treatments for Rheumatoid Arthritis
• Rheumatoid Arthritis Treatment: Are Natural Remedies for Rheumatoid Arthritis Better?

Researchers have learned that quantitative pain assessments are extremely valuable in routine rheumatology care. “Quantitative data concerning pain cannot be obtained from any source other than the patient. Quantitative assessment of pain at each visit in routine rheumatology care, along with the assessment of functional disability, global status, and other patient variables, using a patient self report questionnaire might lead to improved patient care,” Clinical and Experimental Rheumatology.

Pain scales (quantitative pain assessments) are troublesome

Reading questions about pain scales from Jackie and others, I realized that exploring pain scales with rheumatological diseases is a subject which needs a lot more attention. So, when my elder daughter got home from college, she worked with me to create a pain scale image that suggests adding relatable events would be better than just frownies (un-smilies) or the numbers 1 through 10 of a visual scale.

Meanwhile, it occurred to me, “When else do we ask people to just point to something in order to communicate?”

1. Toddlers might point when they don’t know the words to use.
2. When there is a language barrier.

Come to think of it… Both are true with pain scales!

1. We need better language to use to communicate pain levels.
2. There is a language barrier with regard to pain.

So I wrote about problems with pain scales and asked others to blog about their ideas!

How can we cross the pain scale language barrier and better communicate? Let’s hear from the experienced users of pain scales! I hope you’ll visit each post!

Lauren at Unguided Missile wrote Pain Scales.  How many times has my family heard me say, “If only pain were a color”? If anyone has ever wished pain could be seen, they will love Lauren’s post. She hits the nail on the head again simply: “It’s not so simple as how much it hurts. It’s how much does the pain take away from your life.” This is what I’ve said over and over again to both of the rheumatologists I’ve had. #TruDat

Cassandra at Beauty for Ashes wrote Pain Scales… Why We Love to Hate Them. Cassandra describes why it’s difficult for those with rheumatic diseases to explain pain to friends or doctors, even using specially designed pain scales. “What if you have been in severe pain for so long that your body doesn’t process it the same anymore… you may say you’re only at a 2 when anyone else would say the same amount of pain is a 7!” However, she points out that pain scales could be useful to track the experience of a single patient, especially if they’re used regularly or between medical appointments. When “our physicians understand the differences in our individual cases, scales to rate the pain can be useful.”

Jodi at Aim for Perfection Editing wrote How Do You Edit Pain? Jodi says we should consider editing the pain scale or in fact “DELETE” it! While I understand the need for measuring disease activity, I was moved by her plea for compassion; it reminded me of my wondering whether doctors should love patients. Jodi wrote: “I think the physician should treat each patient with real compassion and concern. Instead of having us fill out a chart of meaningless numbers, sit down and talk to us. Ask me what I do each day. Ask me how my pain hinders those activities. Ask me my specific concerns. Ask me how I manage. Ask me things that relate to my ability to live my daily life, and listen to what I have to say.”

Dana of At the Water’s Edge wrote Rate Your Pain. Dana distinguishes between “soreness” and being “in pain;” also she separates the issue of the constancy of pain. She offers a diagram to help us distinguish the various components that contribute to pain. This is an excellent step. Improving communication about pain is the heart of the matter.

Note that like many others, including yours truly, Dana used a “9” to rate the worst pain she ever experienced, regardless of its medical implications, as if “10” means “Don’t go there.” She moderated her answer as if she assumed that “10” is an answer that is considered unreasonable.

Linda at Rheumatoid Arthritis –Combating Pain wrote Need For a Accurate Pain Scale For RA. Linda recommends The Comparative Pain Scale by Jack Harich. She believes that rheumatologists and medical professionals could certainly assist us better if there were better ways to communicate about our pain.

Jennifer at The RA Vegan wrote Thoughts on Pain Scales and RA. Jennifer’s pain scale adds words to the numbers one through ten, to add significance to each level. One significant thing to notice is that her “one” is a level of pain that is low enough to ignore. It is not pain-free. Pain-free could be zero, but some level of pain is assumed which seems typical of people living with RA. Her pain scale is written in terms of her mothering experience, but as she explains, it is still about pain because of the way that “the pain I deal with impacts my life.”

Jeanette at Renplus wrote It’s all in your head — NOT! Jeanette explains the frustrations with communicating pain: it’s usually invisible and many people have difficulty communicating about it. She suggests that communication is the solution to the imprecision and subjectivity of pain measurement: “People need to communicate to their medical professionals completely and honestly how they feel. Medical professionals need to document the patient’s communication and ask for clarification with compassion.”

Megan at Objects in Mirror are Closer than They Appear wrote (Almost) Wordless Wednesday: Pain Scale for the Vain Girl. She created a visual pain scale called “Pain Scale (through Shoes).” She agrees with others who remind us that those of us with a “continuous level of pain” often develop a “new normal.’”

Rachel at A Happier Mommy wrote One Size Fits All. She suggests that pain could be rated with questions better than with numbers. The bottom line is trust and honesty between patients and doctors: “In all honesty, unless you have a doctor who is willing to really listen and get to know you, there is no perfect pain scale.  Everyone is different and carries a different pain tolerance and response.”

Kirsten at Not Standing Stills Disease wrote The Medieval Pain Scales. She thinks life might be better without pain scales with “those damn faces mocking your pain.” Her great idea is for a doctor to provide patients with a copy of the pain chart. Then each patient can keep “a general record of your pain for a month or longer before your appointment, according to the chart. Then, when you are asked what you current pain level is, you should be keeping this chart in mind.”

Nicole at The Confirmed Ache wrote Pain Scales. She discusses how important it is to pay attention to the messages of one’s body, especially pain. She suggests patients find a scale they like and use it to help know when it’s time to take medication or seek care: “I would definitely recommend a pain scale, especially for those who are newly diagnosed. I think it’s good to rate your pain and keep track.”

AfternoonNapper at The Afternoon Nap Society wrote On A Scale of 1 to 10, How Would You Rate Your Pain? AfternoonNapper hones in on the problems of subjectivity and relativity of pain: “The healthcare professional doesn’t truly know me, and I don’t know him or her. The healthcare professional can not ask, ‘So how does what you’re feeling now compare to that time I stepped on a rusty nail and had to go get a tetanus shot?’” Like so many of us, partly due to fears about perceptions, she avoids using of the highest pain rating: “I reserve a ten for a pain that I have not yet experienced” even though she has been “cut in half sideways for elaborate bypass surgery.”

Hurt Blogger at The Hurt Blogger wrote Evaluating the 1-10 Pain Scale. Hurt Blogger shares the intellectual process that occurs when she is asked to rate her pain. Like my daughter and I did when we created our pain scale, she provides relatable events for each number on a pain scale. However, she adds this terrific idea: Rheumatologists and pain specialists should have patients complete a worksheet which details personal experiences to which patients relate various pain levels. This can be kept in the front of the chart with updated pain scale replies.

I think this could go a long way toward helping the care-givers know the relevance of the answers patients give. It’s almost like giving them a window into that thought process that occurs in the seconds between the question and the answer: “How do you rate your pain?”

Lene at The Seated View wrote Faces, Earthquakes and Ebola: Making Pain Scales Work in Real Life. Lene addresses the problems with rating pain such as the tolerances we naturally have to pain, the filters we “slap” onto it to reduce its affect on us (brilliant explanation of coping mechanisms), and the different types of pain: “How can you compare the sharp, clean, localized pain of surgery (The Ginsu) with the Dirty Cotton pain of an RA flare?” She compares various visual pain scales, her favorite being those which relate the way the pain interferes with one’s life.

Tanya of Tanya Martin wrote RAD Pain Scale – Take One. Tanya created her original pain scale for Rheumatoid Autoimmune Disease (RAD) aka Rheumatoid Arthritis (RA). She created a chart that is customized to the types of pain experienced with RA. It is also customizable to specific patients. “I put an example of something they may write to allow family members to see what help they may need during those levels of pain. They may not be able to communicate or think clearly enough ask.” (Click on her chart to enlarge image.)

Amanda at Amanda Gibson wrote Pain Scales. It was a late entry, but I wanted to include it since it has more good advice about communication.

What have we discovered about pain scales?

1. Communication is the crucial issue. Better communication about pain levels will lead to better medical care.
2. Communication is improved by honesty, trust, and accuracy by each party, patient or care-giver.
3. Comparing one person’s responses to another is probably less helpful than comparing the same person’s answers over time.
4. Rating pain in the office with a pain scale on a single day, as Jackie said in her question, does not give a complete picture of a person’s pain.

Recommended reading

• Does Rheumatoid Arthritis Pain Really Hurt That Much?
• 4 Funny Things about Pain Scale Charts
• Click here to read more rheum blog carnival posts
• List of posts about Rheumatoid Arthritis pain

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

If you’ve been reading my blog long, you know I talk about hope as a verb – something you do. Hope is not something that some lucky people just have. When you’re actively hoping, you’re probably doing as much as you can too – even if it’s “only” praying.

Hope typically leads to action.

Actually, I’m really hoping this nausea will go away. That’s why I just got up and took another Pepto-Bismol.

1) Just like many of you: fighting & hoping to get as much of my life back as possible

Hoping I can find a treatment that will slow down my Rheumatoid disease, I’ve tried every type of treatment I could. I got into a clinical trial as a way to try rituximab when every other door was shut. I’m hoping really hard that Rituxan will be the one that works on me. Like I said, hope can be hard work sometimes.

2) Together with many of you: fighting & hoping to improve all our lives

There is another thing I’ve hoped hard about this year: improving the lives of people with Rheumatoid disease. The thousands of patients who write comments and letters drive me forward every day. You may know I worked with other patients throughout 2010 to establish the Rheumatoid Patient Foundation. In our first year, 2011, we’ve accomplished huge steps toward our mission. While we’re growing quickly, our foundation has already accomplished so much! We should celebrate! Here’s a partial list:

• Assembled an impressive and motivated Advisory Board
• Organized volunteers who help accomplish our goals
• Printed & distributed literature presenting the patient viewpoint in a professional format
• Published a ground-breaking video The Faces of Rheumatoid Disease
• Exhibited at the American College of Rheumatology Scientific Meeting
• Been approved for grants for projects which fulfill our mission
• Established working relationships with numerous professionals and organizations
• Created a website with valuable information for patients and care-givers
• Launched RPF social media profiles to increase awareness

Seeing how much we can accomplish, it’s not hard to imagine that we can do even more in the next year! There are so many things that can be done to improve things for people living with Rheumatoid disease! The Board of Directors of the RPF has set some exciting plans in motion to make many of the ideas patients have discussed on this site for the last couple of years become a reality! Doctors and patients have asked us for resources and tools for patient care, research collaboration, and disease awareness. The needs are so great and we, as patients ourselves, are the ones who can best meet them – and we are! Please join us now in doing all we can to help the RPF help patients!

Here’s how you can help the RPF help RAD patients right now:

1. Make a donation to the RPF – click here. Ask others to send end-of-year donations too.
2. Watch the new RPF Faces of Rheumatoid Disease video – click here. Don’t forget to LIKE it on YouTube and share it!
3. Click here to get new RPF posts emailed to you or subscribe to the feed of the RPF blog called RAD Events on the RPF website to keep up to speed.
4. Join our new RPF Facebook page – click here and share with friends.

Recommended reading:

• Hope Is Like Rheumatoid Arthritis Therapy in a Spray Can
• Is there a cure for Rheumatoid Arthritis?
• Mayo Clinic Video Interview: Patients at ACR Scientific Meeting

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.

Feeling and looking fabulous with RA sells well, but how much can lipstick help? Most people living with Rheumatoid Arthritis have felt the sting of someone suggesting we don’t need to be as sick if we would only try _____. Hearing this can seem harsh, especially to those whom medications don’t help much. We feel like we’re doing all we can.

Many of us have some family or doctors who think RA is an exaggeration or friends and neighbors who don’t help much. It can sting to be compared to another person living with RA. How To Look And Feel Beautiful With Autoimmune Disease is a typical example of how RA is portrayed.

“You could feel fabulous today and horrible tomorrow,” YouBeauty reader Jane says about RA. When a bad day strikes, she’ll stay in bed. But most of the time, she puts her best face forward, even if she’s swollen and in pain. I make a point of looking my the best,” she says. “I always feel better when I put on my red lipstick.” (Grammar error in original.)

It’s luck, not lipstick

I’m glad Jane has days when she feels fabulous, but the article implies that’s a common experience. I know of a few patients who can still wear high heels – and others who daily use wheelchairs or crutches – and every level in between. This causes a lot of confusion and ridiculous assertions. Even some doctors say that biologics work on everyone or that an antidepressant works just as well. People with such views push books, videos, or vitamins every day.

Integrative Health Expert Jim Nicolai, M.D. agrees — you could lift your spirits with something as small as finding a really good set of cosmetics. “If there’s something you feel really good about and it makes you feel good, I promote it as a health strategy,” Dr. Nicolai says about working with patients at the Dr. Andrew Weil Integrative Wellness Program at the Miraval Spa in Tuscon, Arizona.

Remission or mild RA that flares periodically is the reality of some. But it’s not lipstick that makes it so – it’s most likely genetics. I know many people with severe RA and a good attitude – it’s not their fault. Lipstick is great; it’s just not much of a “health strategy” for a serious illness like RA. These articles might confuse people that mental strategies can fight RA: “Even on the ugly days, there are ways to try syncing your body and mind, so you start feeling as good as you look.”

3 Reasons to be wary of fabulous articles

For Jane: “when a bad day strikes, she’ll stay in bed.” But one can’t spend every day in bed; what if the bad days just continue? What if someone is physically incapable of applying makeup? Who can judge what is another person’s “best”? The article mentioned that “some people experience chronic, debilitating symptoms,” but that’s followed by a long article about those who “have the occasional flareup.”

1. We mustn’t ignore the fact that Rheumatoid disease is not the same in every patient or in the same patient over time.
2. We can’t assume an emotional cause. While many RA patients do get depressed, the majority do not have emotional problems. Moreover, the destructive results of the disease are not attitude related.
3. I don’t think we should ever imply that anything about RA symptoms is a lifestyle choice.

Postblog: In addition to cosmetics, this article promoted meditation, attitude, and exercise as methods to improve RA – all good things. I realize people grow tired of feeling that they or their illness are invisible so they may respond enthusiastically to any article about it. However, I worry that it can do more harm than good to present lipstick as a “health strategy.” Most RA patients I know fight RA with plenty of grace and little complaining. Let’s be sure never to imply that their symptoms are their own fault or that they could feel better if they just tried harder.

Recommended reading

• 20 Questions RA Patients Should Ask a Doctor
• Severe Rheumatoid Arthritis Versus Mild Rheumatoid Arthritis
• 3 Reasons Why the Public Image of RA Is So Rosy