1. Simple urine test may predict who responds to TNF biologics!

British researcher Dr. Sabrina Kapoor noted that the metabolites which are a result of the effects of tumor necrosis factor (TNF) on metabolism should be present in the urine or blood of patients. She found that pretreatment levels of histamine, glutamine, xanthurenic acid, and ethanolamine were found to be correlated with patients’ response to anti-TNF therapy.

Urine samples from 16 Rheumatoid disease patients were compared with those of 20 Psoriatic arthritis patients (PsA). Samples from the patients with RA were highly correlated (85%) with the treatment outcomes. This was a very small study, but it the results indicate it may be possible to use such a test to indicate which RA patients have TNF-dependent disease activity and thus will respond to this type of treatment.

Read more on urine tests predict TNF Biologic response in RA patients in Rheumatology News.

2. “Low-dose oral prednisone improves clinical and ultrasonographic remission rates in early Rheumatoid Arthritis.”

In an Italian study of 220 early onset RA patients, “low-dose prednisone” used as a “co-medication” with methotrexate resulted in a higher proportion reaching clinical remission and low disease activity measured with power Doppler ultrasound. Power Doppler was used because the authors are aware that damaging “sub-clinical” inflammation can be detected with ultrasound (US), providing a more accurate assessment of whether prednisone helps achieve a state of very low disease activity or remission.

Methotrexate doses were raised from 10 mg weekly to 25 mg, as tolerated. One half of patients received the prednisone dose starting at 12.5 mg per day, lowered to 6.25 mg daily after two weeks. “The frequency of patients achieving clinical remission (DAS28<2.6) was significantly higher” in the methotrexate with prednisone group. “Similarly, the probability of reaching PD negativity was significantly higher” in the methotrexate with prednisone group.

However, “low disease activity” levels were similar in both groups, about 75%, again demonstrating the value of aggressive treatment in early onset RA with therapeutic adjustments intended to “treat to target” of low disease activity or remission.

Read more about prednisone improving ultrasonographic and clinical results in early onset Rheumatoid Arthritis.

3. “A new Mayo Clinic study shows that heart disease risk assessment tools commonly used by physicians often underestimate the danger faced by rheumatoid arthritis patients.”

Mayo Clinic confirms standard heart disease risk tools drastically underrate heart disease risk in Rheumatoid Arthritis. According to Dr. Eric Matteson, “Physicians caring for patients with rheumatoid arthritis should be aware of this heightened risk even when conventional risk factors seem to indicate no increased risk, and consider measures to assess and lower CV risk in these patients.”

This study draws from the Rochester Epidemiology Project which, as we’ve noted before, allows Mayo Clinic to more closely estimate the actual incidence of RA and other health conditions.

“The observed heart disease risk turned out to be twice as high among women and 65 percent higher in men than the Framingham risk score predicted, and the Reynolds tool had similar shortcomings, researchers found. Patients 75 and older proved to be three times more at risk than the Framingham score indicated. Patients with positive rheumatoid factor also had more heart disease events than the risk scores predicted,” reported Sharon Theimer for Mayo Clinic News.

Read more about challenges to measuring heart disease risk with Rheumatoid Arthritis.

Related reading

• 20 Facts About Rheumatoid Heart Disease, important research facts ignored in the news
• Every article on RAW about Rheumatoid heart disease
• Articles on RA Warrior about Musculoskeletal Ultrasound for RA
• RA Disease in the News, Vol.7: Increased Atrial Fibrillation Risk, Steroids Reduce Citrullination, Self-performed Joint Counts

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Some estimate that tofacitinib could be approved by the US FDA within a few months after mixed votes and mostly inaccurate press reports. It’s fitting this discussion takes place as rawarrior.com begins its fourth year of reporting the patient point of view Thursday. Many are hopeful for a new treatment and never was the patient perspective more essential!

The PANEL: 4 distinct votes about approval of tofacitinib

The FDA Arthritis Advisory Committee (AAC) actually took four votes on tofacitinib at the end of the meeting May 9th. They voted 2-8 on the first question, finding that Pfizer has not sufficiently demonstrated that tofacitinib stops radiographic damage. Pfizer hopes forthcoming clinical trial results will address this concern, according to one source. The second vote was unanimously in favor of Pfizer, that the clinical trial data provide substantial evidence of the efficacy of tofacitinib for the treatment of moderately to severely active Rheumatoid Arthritis. Another vote, with regard to the JAK’s safety profile, was split: 7, yes; 2, no; 1, abstain. Finally, 8 of 10 recommended approval for use after failure of one or more DMARDs.

One of the two dissenting voters, Dr. Sharon Gabriel of Mayo Clinic, explained that she would support the application if the language were more restrictive so that an RA patient might not move directly from failing a weaker DMARD such as Plaquenil directly to the new JAK inhibitor. Since there is a long track record with methotrexate, Gabriel’s point is valid. The wording will likely be modified so that patients will have to try more than one disease modifying drug before getting access to tofacitinib.

Although Pfizer’s tofacitinib application will likely be approved, it may not be approved as a first-line DMARD yet, but either a second or third-line drug. When approved, Orencia and Actemra were used similarly; patients had to have insufficient relief from DMARDs and TNF inhibitors.

Access the entire New Drug Application (NDA) briefing document (254 pages) “Tofacitinib for the Treatment of Rheumatoid Arthritis.”

The PRESS misses the mark because they have no idea

We watched a variety of TV reports Wednesday evening to see how the tofacitinib hearing was handled. We’ve also read a few news articles over the last few days. Clearly, most of the press know as little about Rheumatoid disease as the rest of the public knows; they remain confused about what the disease is or how badly new treatments are needed. None were completely accurate; some are funny even if they’re sad.

Pretty good: Medpage Today has a good article about various points considered by the AAC as they debated and voted on the NDA for tofacitinib.

The bad: The Wall Street Journal gave the following as their entire explanation of RA: “Rheumatoid arthritis is a chronic inflammatory disorder that usually affects small joints in the hands and feet.” Wouldn’t it be nice if Jennifer Dooren were correct, but alas, she’s not. One wonders whether she did her research by reading Woman’s Day magazine.

The ugly: An article on EmaxHealth takes the cake. “Although individuals suffering from rheumatoid uterus (serious proofreading error – yikes!) are anxious to try a new medication, which might provide them with relief, they might be trading the possible improvement of their arthritis with another, possibly serious problem… Arthritis sufferers who have not tried aspirin should discuss its use with a healthcare professional, ideally a rheumatologist.”

Does anyone believe the press would recommend aspirin (or Tylenol) as a treatment for Lupus, MS, or Lymphoma? This happens to RA patients because the disease is misnamed Rheumatoid Arthritis. We know that RA is not a type of arthritis, but that arthritis is only one symptom of a serious disease that can affect vital organs; but these reporters apparently do not.

The PATIENTS, the principal stakeholder, have no vote, no press agent

Patients are the reason for the decade plus of research leading to tofacitinib. Patients are the biggest stakeholder in this decision and the only ones with a full appreciation of what the disease entails. We are not “anxious to try a new medication;” rather, we deserve effective treatments that will stop disability and premature death as much as victims of any other diseases do.

Recommended reading

• Video Blog: Two Essentials with a Rheumatoid Arthritis Diagnosis
• Keeper or Loser: I’m Not Giving Up, But What Do You Think?
• 6 Ways to Get Hard Projects Done With Rheumatoid Arthritis

Postblog: Victim is a word seldom if ever used on this blog; however, it seemed to fit this context best.

EDIT 5/15/12 2pm ET: After several negative comments on his site, prompted no doubt by this posting, the author of the emaxhealth article has edited his page so that it no longer reads “rheumatoid uterus.” However, the obgyn doc stands by his erroneous statements about RA treatment. Unfortunately, our community’s attention to their site is likely benefitting them financially. Below is a screenshot from Google, showing the rheumatoid uterus quote.

I hope the inadequate way the Wall Street Journal defined RA will not be lost in this discussion. This is far more grievous given the trust readers have in their publication and the size of their readership.

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I’ve spent most of the last 3 weeks lying down with ice on my neck, or taking extra meds for the back spasms. The night before the FDA tofacitinib hearing, my back got so bad that I was about 90% certain that I would not be able to attend. My little walk to the White House intensified the ol’ back spasms as well as the usual joint flares. I could barely walk the day I testified. And I was extremely unsteady from meds. I felt stupid since resting would have been the safest choice instead of sightseeing. But, like most people with RA, I want my life back – and I fight to get any piece of it. And who wants to be the mom who made her daughter miss seeing the White House and the Washington Monument?

I made it to the hearing Wednesday after 4 hours sleep between med doses, taking tiny steps and holding onto my back. It felt like such a victory to just be there, I assumed it would go well. After all, I’d rehearsed my presentation over 100 times – enough to say it backward. But the frosty room and unresponsive remote control, combined with my physical condition and the disinterested committee drinking water, looking down, or talking while I spoke… I did less than my best.

The one hour public hearing lasted only 25 minutes. I went back to my hotel and slept the rest of the day – still in my dress. Thursday morning, we flew home to Katie Beth’s graduation. No one expected me to attend, but somehow – you guessed it – I did. Then straight back to the bed again. Hopefully, the doc will have some answers for me tomorrow. When Mary Khris texted me about how the hearing went, I replied “God is good.” She answered, “I’m glad it went well.” I said, “No, it didn’t really, but God is still good.” Honestly, I was angry at myself, but it will work out for the best.

Trying to do what you can’t is a pain in the a… sacroiliac area.

Some people who have no idea what it’s like to live with RA judge us for not trying hard enough. That’s why I give patients the benefit of the doubt that they’re telling the truth about their symptoms. And that they’re doing the best they can.

My son Tiger required stitches on his face 4 times before he was 3 years old – each time because he charged forward, pell-mell. He’s always been a warrior. Now 15, spring training for football has come with severe sacroiliac pain. The pediatrician has him on ibuprofen while he waits for a cancellation at the specialist. Friday night, I drove a few blocks to pick him up at practice and he was walking like me (i.e. a person with RA) again. When he felt like talking, he explained he couldn’t finish running laps because he literally couldn’t go another step. A coach gave him an alternate exercise, but he couldn’t do that either. The coach would not take no for an answer. He said, “Momma, you don’t understand what it’s like when you can NOT do something and yet you HAVE to. And no one knows how bad it is.”

“Son, I think I do understand. You just described my life with RA.”

More on the outcome of the meeting tomorrow! Meanwhile, these IMPORTANT NOTES

• The deadline for the Scavenger Hunt contest is extended until Friday, May 18. Two readers will win 6 kitchen tools each to keep or give away.
• Guess what BIG celebration occurs this Thursday, May 17?
• New Press section of the website is almost completed; see menu at the top of the page.

Recommended reading

• Tiger inspired the Dr. Laptop post
• Tiger and Moi at Redskins’ training camp
• The “Can’t” Question with Rheumatoid Arthritis
• Last Mother’s Day: Surprise… Happy Mother’s Day!
• Pass the Pickles – and the Croutons

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The current excitement about Pfizer’s tofacitinib

Tofacitinib is an oral medication (i.e. pill) for the treatment of RA. RA Warrior reported on the ORAL Trials when the larger Phase 3 clinical trials began over two years ago. For the past couple of years, we’ve followed the press releases and seen the buzz about Pfizer’s JAK at ACR. Market analysts are now on the edge of their seats to see what the Arthritis Advisory Committee will recommend this week since tens of billions are at stake. The FDA usually follows the recommendations of the AAC. Speculation about when the drug could be approved will be a hot topic on the wires.

At this point, 5,000 people in 35 countries have taken tofacitinib, the first of about a dozen similar compounds in the pipeline. Tofacitinib inhibits Janus kinase (JAK), a protein which acts as a hub in the cytokine network that creates inflammation. Currently approved treatments for RA (Biologics) interfere with the receptors of various immune cells such as TNF (Humira), T-cells (Orencia), B-cells (Rituxan), or IL-6 (Actemra). Tofacitinib targets a broader phase of the inflammatory process.

The trial results seem similar to those of Biologic treatments. However, Pfizer has tested tofacitinib in patients who did not respond to TNF inhibitors, indicating that perhaps a different set of patients can be helped by this new compound. Pfizer has also conducted trials without methotrexate, unlike the Biologics which were approved with a background drug (methotrexate) in place.

The Arthritis Advisory Committee hearing for tofacitinib

The FDA Arthritis Advisory Committee will meet Wednesday May 9th. I’ll be giving an oral presentation, speaking on behalf of the Rheumatoid Patient Foundation. Click here to read the accompanying written presentation. It’s not as funny as I like to be or as academic as I’d like, but hopefully it’s what is appropriate for the occasion. I’ve also prepared slides with plenty of statistics to tell more of the story.

This interesting quote appeared in the Reuters feed, so the quote is all over the net: “”We expect a noisy meeting for tofacitinib but ultimately believe the drug will receive a positive vote from the panel and will be approved by the FDA in August,’ Chris Schott, analyst at J.P. Morgan, said in a research note.”

Not sure what “noisy” means, but it might be interesting.

One doctor who was also quoted in the feed might want to read the recent review of Consumer Reports’ RA drug recommendations: “’When we already have good treatments available, and there’s no evidence that this drug really is better than others, I tend to encourage patients to go with what I know, which is things like Humira or (Amgen’s) Enbrel,’ said Dr. Scott Zashin, clinical professor of medicine at the University of Texas-Southwestern Medical School.”

Stay tuned, folks! It’s definitely not going to be boring!

Don’t miss this!

• Sign up to get the most recent newsletter – click here.
• A 4-minute National Public Radio (NPR) interview with Kelly – click to listen.
• A scavenger hunt with two winners of 6 prizes each – click here.

Recommended reading

• Pfizer’s JAK inhibitor Tofacitinib EMA Application Validated
• Tofacitinib / CP-690550 aka Tasocitinib Succeeds in Pfizer’s 2nd Phase 3 Trial
• Rheumatoid Arthritis Drug Trials for Tasocitinib aka CP-690550

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We are making progress. Although there’s still a long way to go, patients are playing a part of advancements toward more complete understanding of Rheumatoid Arthritis as a disease. We might suppose that once RA is more widely understood to be a systemic disease, it will be treated as such with various needs of patients (some listed below) being addressed.

At that point, we might think things will promptly fall into place. But we’d be wrong if we assumed that.

We will accomplish these goals, and the new Rheumatoid Patient Foundation will work to achieve them. However, improving medical care depends on other factors beside patients’ needs being known. E-patient Dave’s post (with cool slide show) shows one reason that information might not always be enough to create change.

Study shows patients with more active RA receive less adequate care

Look what investigators found recently regarding whether the 2008 American College of Rheumatology (ACR) treatment recommendations for RA made a difference: “Publication of the recommendations did not significantly change treatment patterns for those with active disease… Substantial numbers of RA patients with active disease did not receive care consistent with the current ACR treatment recommendations. Innovative approaches to improve care are necessary” (Prescribing practices in a US cohort of rheumatoid arthritis patients before and after publication of the American College of Rheumatology treatment recommendations).

But there’s more. The study of 1632 U.S. patients also found that the care was more consistent with recommendations in patients with low disease activity. In each group, it was the patients with poor prognosis indicators who were not receiving care consistent with recommendations.

I was stunned when I read Medscape writer Janis Kelly’s description of why: “They suggest that a contributing factor might be lack of awareness of the patient’s disease activity at the time of the visit” (RA Treatment Still Lagging Behind ACR Recommendations). Stunned only because this is something I’ve written and said so many times. Yes, problems in RA treatment are becoming apparent, even to the medical community.

New 2012 RA treatment recommendations may not take effect for years

Finally, this month, the ACR updated those 2008 recommendations for treatment of RA with DMARDs and Biologics. It seems more comprehensive and more aggressive, a good step. Yet, we have to ask how much it will help patients since “more than half of patients with RA who have moderately or highly active disease still do not receive care consistent with the guidelines, mostly because they are undertreated” and treatment recommendations tend to “typically require 17 years to affect routine patient care” (Medscape).

What do you think can be done to reduce the 17 years? How can we move the ball farther in this decade? This will be the mission of patients.

Footnote:

Some needs of RA patients

• Monitoring and treatment even for non-joint aspects of the disease (Comprehensive RA care)
• Extensive range of therapies to preserve use of joints.
• Broad information about the disease and treatments for newly diagnosed patients
• Better accommodations to keep people working as long as possible
• More research leading to better treatments and a cure
• Improved access to disability assistance

 Recommended reading

• What about a Clinical Protocol for Rheumatoid Arthritis Disease?
• Can We Treat the Whole Person or at Least the Whole Disease?
• Do you have a Rheumatology Care Team?

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When I wrote my first RA Warrior post on Sjogren’s syndrome in 2009, I wasn’t sure whether I’d ever be diagnosed with it. But I thought it was important to cover on the blog. I had a fun idea for illustrating the pronunciation of the name so my daughter Mary Khris created the “show grins” original character for us.

Reading research articles for that post, I learned that about half of Sjogren’s syndrome patients are Rheumatoid Disease patients, having “Secondary Sjogren’s.” I say was because new Sjogren’s guidelines seem to change that. The new Sjogren’s syndrome criteria  may eliminate that distinction between Primary and Secondary Sjogren’s.

I’m not sure yet how that matters. What always matters to me is that people can get proper treatment. Which brings me back to my own Sjogren’s diagnosis.

My first rheumatologist, Dr. KBC, asked me at every appointment whether I’d seen the eye doc yet. I would ask why and be told it’s just a good idea with RA. I didn’t want any more doctors because RA was consuming a large portion of my life and my schedule already.

Eventually, I went to the eye doc. But he was one of the “you-don’t-look-sick-why-are-you-bothering-me” (YDLSWAUBM) docs. We paid the bills, but he acted like he was doing the rheum doc a big favor to see me. He mumbled something about my eyes being dry and learning to deal with eye drops… but told me to come back if it I have vision trouble.

I left there determined to never go back. I told Dr. KBC to check that off my list and went back to focusing on overcoming RA to do as much as I could.

Persistent Sjogren’s syndrome won’t be ignored

But my eyes didn’t care if I was busy or in pain or tired of doctors. My eyes got drier and I ignored them more. Eventually, I was squinting all the time and wearing sunglasses, even indoors in the evening. Light was painful.

Aware of how common Sjogren’s is with RA. Aware of its symptoms. I still had no clue what was wrong with me.

I ended up doing exactly what I’d warned about in that blog post: Bigger problems allowed me to easily ignore eye symptoms such as itchiness, grittiness, and sensitivity to light. How do I know if my eyes are dry; I’ve bigger fish to fry?

When I could no longer see well enough to read or drive, I had to stop ignoring my eyes. It had been about two years since I’d seen the YDLSWAUBM doc. The office is across the street from my pediatricians so I walked in one day and asked for an appointment with someone else. The women at the desk laughed, “We understand.”

Soon I saw Dr. U who was everything patients want in a doctor. My eyes were carefully examined and my condition was discussed intelligently. The surface of the eyes was wrinkled from extended periods of dryness, causing the glare whenever light hit the surface of my eye. We explored management and long-term treatments, from Omega-3 supplements to Restasis. And he gave me prescriptions for glasses and sample eye drops.

Over several visits, Dr. U wrote “symptoms consistent with Sjogren’s” on my chart, even sending notes to my other doctors because he was unsure whose job it was to actually diagnose me. Meanwhile I admitted to myself that my difficulty swallowing food was probably related to my dry peeling lips.

My Sjogren’s story has more chapters. Dr. U retired. We see Dr. P now. I have permanent plugs in my tear ducts. They are not as comfortable as the temporary ones were, which Dr. P pointed out after they were inserted. I might have chosen differently and I’m not sure how long I can put up with the sore right eye. It may depend on how successfully my RA pain distracts me.

Do you have Sjogren’s syndrome symptoms? If you’ve been diagnosed, how were you diagnosed? If you also have RA, do you receive any additional treatment for the Sjogren’s?

For more on Sjogren’s and its new diagnosis criteria, read this recent post.

Recommended reading

• Will Venus Williams’ Sjögren’s Syndrome Help RA?
• Preclinical Rheumatoid Disease: There Are No Joints in the Lungs
• Does It Matter Whether Rheumatoid Arthritis Affects DIP Joints?
• What is Sjogren’s Syndrome?

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The ends started to take dreadlock form the last few days, somewhat an improvement. But the front looks really bad [deliberately not in photo]. My neck is a bit better today and I’m going for it! It will be a very long day of errands, meetings, and phone conferences, but it will feel good to look “normal.”

Does that sound random? Bear with me.

Yesterday, I was speaking with someone who needed to understand RA patients’ point of view for her project for a pharma company. And she didn’t (understand).

Giving her free advice, I told her that my neck and hands have hurt too much to make it worthwhile to wash my hair. She hesitated to believe me, maybe because she’s been told that medication helps everyone with Rheumatoid disease to feel close to normal on most days, with maybe occasional flares.

Finally, I told her: Look, there is a small percentage of people who have remission or mild RA who can do the things you suggest, but that is not your audience anyway since your drug is for people with “moderate to severe RA,” right? Make sure you don’t insult anyone…

Of course, people with RA do not yet have THE silver bullet. And researchers know that. That’s why they investigate how treatments stack up against each other. Here are two interesting studies I’ve read recently.

Seeing “very little difference among the current biologics”

In “Abatacept versus other biologics in methotrexate inadequate responders with rheumatoid arthritis: you like tomato and I like tomahto… let’s call the whole thing off,” Yusuf Yazici (a colleague of Dr. Ted Pincus), comments on current studies that compare biologics: “(A)s far as efficacy is concerned, there is very little difference among the current biologics.” Yazici says there are more pressing matters to explore to improve patients’ lives. “It is time to stop picking favorites among the biologic agents and focus on how we can get more physicians to monitor RA outcomes that would allow us to be as aggressive as RA demands us to be.”

Comparing less expensive triple DMARD therapy to Enbrel plus methotrexate

Over several years, the TEAR Trial has examined early, aggressive RA to compare oral DMARD combination therapy (methotrexate, sulfasalazine, and hydroxychloroquine /Plaquenil) to methotrexate plus etanercept (Enbrel), asking:

1. Whether any combination therapy (three DMARDs or methotrexate with etanercept) is more effective than methotrexate alone, with a step-up approach.
2. How does combination therapy compare to methotrexate plus a TNF Biologic?

“The treatment of rheumatoid arthritis (RA) has changed dramatically over the past decade” and there is a need to know whether one approach is proven to be more effective, especially considering how costly Biologics are. The primary outcome of the trial was the popular disease activity score, DAS28-ESR between weeks 48 and 102, and this showed no difference between the two treatment approaches. However, the etanercept plus methotrexate patients had a “smaller increase in radiographic scores” (x-rays of hands, wrists, and feet).

More interesting points: “We observed a higher rate of participants not completing the study than we had originally expected.”  Dropout rate was 32.1%, and most of those who decided not to continue cited lack of efficacy or did not provide a reason. The screenshot of figure 3 shows that both immediate therapy (IT or IE) groups had more patients who reached ACR response levels than those with step-up approach.

Nope. No silver bullet yet. Of course the marketing folks can’t talk to the researchers, but I wonder whether the researchers laugh when they watch the commercials that make treatments seem like a cure. Anyway, I hope both of them will talk to patients more.

Recommended reading

• New Way to Report Response in RA Clinical Trials?
• Pass the Pickles – and the Croutons
• Rheumatoid Arthritis and Hair Loss

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UPDATE: New this week: the ACR has just published two items which could bring some progress if they are followed.

1. 2012 Update of the 2008 American College of Rheumatology Recommendations for the Use of Disease-Modifying Antirheumatic Drugs and Biologic Agents in the Treatment of Rheumatoid Arthritis. The full document downloaded as 24 pages. We’ll discuss it further in the future, I’m sure. It updates previous guidelines in the following areas: “1) indications for DMARDs and biologic agents, 2) switching between DMARD and biologic therapies, 3) use of biologic agents in high-risk patients (those with hepatitis, congestive heart failure [CHF], and malignancy), 4) screening for TB in patients starting or currently receiving biologic agents, and 5) vaccination in patients starting or currently receiving DMARDs or biologic agents.”
2. Rheumatoid Arthritis Disease Activity Measures: American College of Rheumatology Recommendations for Use in Clinical Practice. From the introduction: “Despite the push from various stakeholders in the health care system to standardized disease activity assessment in RA and growing evidence that treating to target is effective, most US rheumatologists do not routinely use standardized measures in clinical practice.” Six RA disease activity measures are now “recommended,” including some patient outcome measures we’ve discussed here.

Need for clear objectives for Rheumatoid patient care

What are the goals of rheumatology care for Rheumatoid patients? What are the implications for a philosophy of treatment or a standard of care for Rheumatoid disease? Vast differences in clinical care for RA exist, as we observe every day in our community.

Some areas where a clinical protocol would make a difference for Rheumatoid patients:

1. When to begin or modify disease treatment.
2. When and how to monitor disease activity.
3. When various additional specialists should be referred.
4. Interventions or procedures to offer patients.
5. Baseline testing of common issues associated with Rheumatoid disease.

Evidence of the fundamental need for a consistent RA protocol

1. A large international task force on treating RA to target recommended defining treatment targets for Rheumatoid disease. “Aiming at therapeutic targets has reduced the risk of organ failure in many diseases such as diabetes or hypertension. Such targets have not been defined for rheumatoid arthritis (RA).” They make suggestions which may allow for “optimal outcomes.”
2. On their website, the American College of Rheumatology (ACR) has published Practice Guidelines for Rheumatoid Arthritis: “The ACR has developed practice guidelines to reduce inappropriate care, minimize geographic variations in practice patterns, and enable effective use of health care resources.” In 2002, they published a pdf of clinical practice guidelines for RA which was updated in 2005.
3. Patients frequently wonder out loud whether being treated with DMARDs for RA is sufficient if they continue to experience the same symptoms and/or additional symptoms. Often they’re mistakenly told that it is.

What Rheumatoid patients need and why

Let’s make this very simple. People living with RA want to live as long and healthy as possible, doing as much as possible. Of course, they want to be able to walk a dog or brush their hair or cut their food.

They want doctors to use testing, treatments, or procedures that could promote that. If anyone else had bursitis or a swollen knee or carpel tunnel syndrome or problems with eyes, lungs, or heart, it should be treated. People with RA should be treated too, even though the RA may be the source of the problems.

The Frying Pan Posts:

• Rheumatoid Arthritis Swelling, Take Two
• 2 Reasons Monitoring Rheumatoid Arthritis Matters (More on treat to target)
• Rheumatoid Arthritis Exercise, Round 5

Click here to read more posts about comprehensive care. MUCH more to come.

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A woman I know is an educated patient who has worked hard to make certain she is diagnosed and treated appropriately. Recently, she showed pictures of swollen fingers to her rheumatologist and had her diagnosis changed again. Her doctor explained that the swelling in her photo looked like dactylitis or “sausage finger.”

Her new diagnosis is Psoriatic Arthritis, based upon negative Rheumatoid factor and dactylitis-type swelling. I’ve heard RA patients use the words “sausage finger” many times and seen dozens of pictures. Nothing much surprises me in rheumatology any more, but I had to ask my friend Dr. Google how prevalent the notion is that dactylitis can’t be RA. I found a 1998 article about dactylitis characterizing the viewpoint:

“Compared with the wider spectrum in children, sausage-shaped digits have only a few known causes in adults: Reiter’s syndrome, psoriatic arthritis, sarcoidosis, flexor tendon sheath infections, and gout. In our series, the presence of dactylitis eliminated rheumatoid arthritis from the differential diagnosis” (emphasis added).

A 2007 article in the Journal of Rheumatology “Dactylitis or ‘Sausage-Shaped’ Digit” maintains this opinion:  “Recently, dactylitis has been included, due to its high specificity and sufficient sensitivity, in the classification criteria…” for Psoriatic Arthritis.

Here is a Johns Hopkins image of dactylitis.

Can people with RA have this type of sausage finger swelling too?

Have you? Does it have to be only one finger? And finger shapes vary. If it seems confusing, there may be good reason.

That’s because it is. It’s Too Hazy.

Two other conversations I had today seem to play in concert with this one. The topics:

1) Lupus is listed as an “immune” disease on this popular list of healthcare topics for Twitter. Rheumatoid is listed as a musculoskeletal condition with osteoarthritis, osteoporosis, tennis elbow, and fibromyalgia. I can’t sum up the 600+ pages of rawarrior.com, except to say Not So Much.

I discussed it with someone from Symplur, but it’s hard to summarize, isn’t it? If you are unsure whether Rheumatoid is a systemic disease similar to Lupus or just a type of arthritis, please read some of the articles listed below as Recommended Reading.

2) Last month the ACR published new criteria for Sjogren’s syndrome diagnosis. Today I read “Sjögren’s criteria embrace multispecialty approach” and just said Wow, Really?

The patients’ diagnosis will be judged based upon a blood test, an eye test, and a lip biopsy. I love objective evidence. But wasn’t the whole world so distressed because Venus Williams has some terrible systemic disease that makes her joints hurt and fatigues her beyond belief. Well at least we were aware for a week or so last year. No mention of these prominent symptoms in the “multispecialty approach” baffles me.

The bottom line is that we don’t have a bottom line yet. We know too little about these diseases. It’s that simple. I mean, Complicated.

Note: Statistics vary about the number, but a large portion of Sjogren’s patients are people with Rheumatoid. Until now, this was referred to as Secondary Sjogren’s syndrome. Newsflash for people with RA disease and Lupus: the Sjogren’s criteria article continued, “Furthermore, the distinction between primary and secondary forms of Sjögren’s may now be obsolete, the authors continued.”

Recommended reading

• Preclinical Rheumatoid Disease: There Are No Joints in the Lungs
• Does It Matter Whether Rheumatoid Arthritis Affects DIP Joints?
• Will Venus Williams’ Sjögren’s Syndrome Help RA?
• What is Sjogren’s Syndrome?
• “Dealing with RA Is So Much Easier than Lupus” –Kathy Lubbers

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Is Rheumatoid Disease remission common, rare, easy, or hard?

We won’t examine remission fully today so you might read some other warrior articles about Rheumatoid Arthritis remission. Remission definitions are variable and criteria subjective. All this leads to the current state of affairs with RA remission:

1. Surveys of large RA populations demonstrate that remission is rare.
2. Some small European studies claim Rheumatoid Arthritis remission is common and achieved without much difficulty.
3. A public (including healthcare professionals) sees advertisements which insinuate that treatment allows most people with RA to live a completely normal life.
4. Most significant of all, almost every patient receiving the label clinical remission actually experiences damaging disease activity in joints and possibly elsewhere.

Sustained remission Rheumatoid Arthritis study

Into this mess enters a new take on Rheumatoid Arthritis remission: calculating sustained remission. This new study considers changes in disease activity over time. The study Sustained rheumatoid arthritis remission is uncommon in clinical practice concluded that “in clinical practice a minority of RA patients are in sustained remission.”

The study authors recognize the value of sustained remission, suggesting that sustained remission might be necessary for actual cessation of damaging disease activity and would be preferable to “drug-induced disease suppression” often identified as remission.

Let’s adjudicate remission when three things are understood.

1) An accurate, consistent measure of disease activity is required. It must include joint activity that is invisible to the naked eye and recognize disease activity taking place outside of joints. It should not rely upon blood tests which are typically “normal” in 30 to 40% of patients (due to genetic tendencies).

2) Patterns of disease must be documented and accounted for in measures of remission or disease activity. Although no two patients are identical, many patients experience a flaring disease pattern and others constant disease activity. When patients are examined on Day One and Day 168 of a study, it may not be possible to identify flares that occurred in the interim or current disease pattern. In trials for medications, there is no representative “untreated” group to compare disease patterns.

3) Clinical trials may not apply to the wider population. They may achieve high percentage of disease remission using small numbers of patients who may be unrepresentative of the general RA population for various reasons. Some provide more early or aggressive treatment. Others use exclusion criteria to identify likely responders (i.e.: excluding complicated disease with extra-articular RA, common additional diagnoses like fibromyalgia, or normal blood values such as CRP).

Talking about sustained remission matters

We know that natural RA remission is rare and a majority of patients do not have a thorough lasting response to the routine treatment methods of today. In this case, I hope this headline is repeated. While it’s not very witty, recognizing the facts is necessary before the status quo can be improved; and this study is a step in that direction.

¹More  amusing headlines.

Important related reading

• Rheumatoid Arthritis Symptoms Not Alleviated by Disease Treatment
• A Rheum Full of Contradictions
• New Rheumatoid Arthritis Remission Criteria
• Rheumatoid Arthritis Remission
• Patients & Doctors Differ on Assessing Rheumatoid Arthritis Disease Severity

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