Proposed DHH cuts would hurt those with special needs

May 21, 2012 in Uncategorized by Rheumatoid Arthritis News

Linda Johnson has been receiving care through the Department of Health and Hospital's long-term personal care waiver program for about four years.

by RA Guy

Language Matters

May 20, 2012 in Adventures of RA Guy by RA Guy

by RA Guy

Showing | Seeing | Knowing

May 20, 2012 in Adventures of RA Guy by RA Guy

In less then 48 hours, I’ll be traveling back to my home country of the U.S. for an extended three month vacation. I’ve been residing in South America for almost a decade now…and while I initially used to go to the states at least twice a year, it has now been a little over three [...]

Can a raw food diet heal arthritis and heart issues?

May 19, 2012 in Uncategorized by Rheumatoid Arthritis News

Screeching, painful joints brought on by rheumatoid arthritis crippled Agathe Mathieu's ability to use her hands after she developed the inflammatory disease at 42 years old.

Cross-cultural validation of the Educational Needs Assessment Tool in RA in 7 European countries

May 19, 2012 in Uncategorized by Rheumatoid Arthritis News

The objective of this study was to assess the cross-cultural validity of the ENAT in 7 European countries.METHODS:The ENAT was translated into Dutch, Finnish, Norwegian, Portuguese, Spanish and Swedish versions by using Beaton's cross-cultural adaptation process, and was completed by a convenience sample of patients with RA in each country.

Gender, high DAS28-P index predictive of pain in early RA

May 19, 2012 in Uncategorized by Rheumatoid Arthritis News

For patients with rheumatoid arthritis , female gender and having a high proportion of disease activity score attributable to patient-reported components at baseline are predictive of less improvement in pain at one year, according to a study published online May 3 in Arthritis Care & Research .

rheumatoid arthritis, psoriatic arthritis, arthritis, promo

May 19, 2012 in Uncategorized by Rheumatoid Arthritis News

Three new studies may have shed some light on the causes of arthritis, and the pain and inflammation that accompany the condition.

Slow, steady recovery from battle with rheumatoid arthritis

May 18, 2012 in Uncategorized by Rheumatoid Arthritis News

Slow, steady recovery from battle with rheumatoid arthritis. JoAnn Romeo with grandsons Alex, 3 and Sebastian, 6 Mills.

Darrington civic booster dies at meeting

May 18, 2012 in Uncategorized by Rheumatoid Arthritis News

Tyson, who suffered from rheumatoid arthritis and a heart condition, died Wednesday evening after she collapsed during a meeting of the Darrington Area Business Association.

Measuring educational needs among patients with rheumatoid arthritis…

May 18, 2012 in Uncategorized by Rheumatoid Arthritis News

To insert individual citation into a bibliography in a word-processor, select your preferred citation style below and drag-and-drop it into the document.

The Cause Identified Of LGL Leukemia

May 18, 2012 in Uncategorized by Rheumatoid Arthritis News

Main Category: Lymphoma / Leukemia / Myeloma Also Included In: Immune System / Vaccines ; Arthritis / Rheumatology Article Date: 18 May 2012 - 0:00 PDT LGL leukemia is a relatively rare, malignant blood disease of the mature T-cells and, in many cases, it is related to autoimmune diseases such as rheumatoid arthritis .

GBI Research Release: Novel Drugs to Drive Arthritis Market

May 18, 2012 in Uncategorized by Rheumatoid Arthritis News

NEW YORK , 17 May 2012 - The fast-growing therapeutics market for arthritis is expected to grow further in the coming years as many new companies rush to cater for rising incidence rates, according to a new report by pharmaceutical experts GBI Research.

Ultrasonographic and radiographic results from a two-year controlled…

May 18, 2012 in Uncategorized by Rheumatoid Arthritis News

Ultrasonographic and radiographic results from a two-year controlled trial of immediate or one-year-delayed addition of infliximab to ongoing methotrexate therapy in patients with erosive early rheumatoid arthritis.

Finnish researchers identify the cause for LGL leukemia

May 17, 2012 in Uncategorized by Rheumatoid Arthritis News

Researchers of the University of Helsinki, Helsinki University Central Hospital and Institute for Molecular Medicine Finland, have discovered that a mutation in the STAT3 gene is an underlying cause for LGL leukemia.

Beginning Our 4th Year! 5 Stunning Things I Learned & My Forecast for the Future

May 17, 2012 in Comprehensive RA Care, History of Rheumatoid Arthritis, Reality Check, Special Occasion by Kelly Young

Three years ago today, I typed my first blog post in my back yard on a whim. My daughter had started to blog – what’s to worry about – just do it! Before that, I’d been working on ideas for months. I did have a goal: to build a website where RA patients could find reliable information and have a safe environment to ask questions and support each other. Pretty simple stuff, right?

funny wordpress fail notice

My bad

  1. While I did dream of building a comprehensive website for RA, I had no idea the impact it could make.
  2. Or how much hard work would be involved.
  3. At first, I thought that I was mostly alone; I supposed that most people with RA fit textbook examples, responded well to treatments, and usually received appropriate medical care.
funny tweetdeck screen

The biggest thing I learned was that I was not alone. It took a year to convince me it was safe enough to write my swelling confession. Since then, I’ve realized a majority of patients do not fit the “typical” RA in books. Tens of thousands of comments tell the story.

Here are 5 stunning things I discovered

drs_debate_swelling 1) There is a great divide in rheumatology understanding with regard to various symptoms, especially conspicuous swelling. Too many doctors are not aware of current research or treatment recommendations. There is a stark contrast between the levels of quality of rheumatology care patients receive. A standard of care is needed.

2) Most descriptions of “typical” RA presentation are inaccurate and inadequate.

3) Academic credence is given, by some, to a belief that the severity of RA pain is exaggerated. Medieval theories about women and anger are reincarnated, impeding progress, and using modern words such as hypochondriasis.

4) Highly specialized research is revealing what Rheumatoid disease often entails (such as lung involvement). However, people who live with RA are the only ones with full comprehension of its symptoms. The patient voice is urgently needed and perilously absent in the educational, legislative, research, and industry arenas.

5) Most people who live with RA are the bravest, most optimistic people in the world. People who care for them are a close second.

I’d like to meet & thank every one of the millions of visitors to the site.

funny tweets after  rheum uterus post Who knew I’d make friends like the phenomenal Kevin Purcell, rockstar mentor Dave deBronkart, Mayo Clinic’s extraordinary John Davis, the fearless yet gracious Donna Cryer, and meet sisters like Barbara, Nancy, Dana, Shannon, Karaleigh, Jamie, Jenny, Carol, Kim, Vi, Steph, Connie and brothers like Trey, David, Randy, Bob, Jay, Jason, and so many more…  and my Twitter #rheum-mates, my Facebook family and MD’s who seek patients’ best interests, especially Lothar Kirsch and Shashank Akerkar, Carlos Caballero, Paul Sufka, and Ronan Kavanagh!

While we have 15,000 fans on Facebook, 40,000 views on YouTube, over 18,000 comments, almost 1500 completed our 1st survey… numbers can’t really tell the story. PATIENTS tell the story in their comments, blog posts, and letters searching for needed help and support and sharing it with others.

This winter, I received the WebMD Health Hero of the year award for working with patients. This week, I was chosen by Sharecare as the top online influencer in the world of Rheumatoid Arthritis for working with patients. Last month, I finally created a Press tab to collect all that info that I’d lost track of.

Forecasting the future for Rheumatoid patients

I used to make lists, but I mostly gave that up because with RA, it became too discouraging. Even so, it haunts me the dozens of posts partially written and the dozens of projects not yet completed. But when I pry myself away from that, I look forward – and I see a different future.

From my unique vantage point, I see a future in which…

  • Doctors are aware enough of Rheumatoid disease that people are promptly diagnosed
  • Disease treatment options are applied or adjusted without delay
  • Symptoms are treated instead of dismissed, doubted, or debated
  • Research dollars reflect the severity of the disease and the millions affected
  • Patients are not told by loved ones to forgo treatment for cherry juice, raisins, or jogging
  • RA awareness brings appropriate accommodations / assistance when patients CAN’T do things

“I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I —
I took the one less travelled by,
And that has made all the difference.”
From The Road Not Taken (1916) by Robert Frost

Related posts

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May is Arthritis Awareness Month

May 17, 2012 in Uncategorized by Rheumatoid Arthritis News

May is arthritis awareness month. Arthritis is a chronic, degenerative disease that affects more than 27 million Americans.

FDA concerned about risks of Pfizer’s experimental arthritis drug

May 17, 2012 in Uncategorized by Rheumatoid Arthritis News

The current Pfizer attempt to gain FDA approval for marketing appears to be ignoring its own scientists' concerns.

The 2010 ACR/EULAR criteria for rheumatoid arthritis: do they affect…

May 17, 2012 in Uncategorized by Rheumatoid Arthritis News

Rheumatoid arthritis is diagnosed based on phenotypic characteristics. The 2010 ACR/EULAR criteria were derived with the aim of classifying RA earlier in the disease course than the 1987 ACR criteria.

by RA Guy

HealthCentral: Show Us Your Hands! A Story Of Hope And Community

May 17, 2012 in Community Corner by RA Guy

Five months ago, RA Guy put out a call for submissions to a community collage showing the hands of people living with different kinds of inflammatory arthritis. “I knew I had tapped into something powerful when I saw my inbox completely full of photos,” RA Guy says. Many of the photos were accompanied by remarks [...]

Incyte’s Potential Blockbuster Pipeline Asset Makes It An Attractive Takeover Target

May 17, 2012 in Uncategorized by Rheumatoid Arthritis News

Goldman Sachs has upgraded Incyte from Neutral to Buy with a price target of $29 , suggesting a 26% premium from today's prices as the drug discovery company focused on developing proprietary small molecule drugs has now become the latest M&A target Those that follow Incyte Corporation, know that it has a broad range of discovery capabilities ... (more)

Obesity raises women’s risk of rheumatoid arthritis

May 16, 2012 in Uncategorized by Rheumatoid Arthritis News

When talking to patients about health risks associated with being overweight or obese, physicians should discuss rheumatoid arthritis, says the lead author of a recent study.

Controlling Inflammation: Novel Drug Candidates Offer New Route

May 16, 2012 in Uncategorized by Rheumatoid Arthritis News

Pursuing a relatively untapped route for regulating the immune system, an international team of researchers has designed and conducted initial tests on molecules that have the potential to treat diseases involving inflammation, such as asthma, rheumatoid arthritis, stroke and sepsis.

The PREMIER study: A multicenter, randomized, double-blind clinical…

May 16, 2012 in Uncategorized by Rheumatoid Arthritis News

The PREMIER study: A multicenter, randomized, double-blind clinical trial of combination therapy with adalimumab plus methotrexate versus methotrexate alone or adalimumab alone in patients with early, aggressive rheumatoid arthritis who had not had previous methotrexate treatment.

TiGenix : Business & Financial Results First Quarter 2012

May 16, 2012 in Uncategorized by Rheumatoid Arthritis News

Results for the First Quarter 2012 ChondroCelect Sales up 123% - All Clinical Programs on Track - EUR 16.7 Million Cash Leuven - May 15, 2012 - TiGenix NV , a leader in the field of cell therapy, today gave a business update and announced the financial results for the first quarter ending March 31, 2012.

FDA OKs biologics manufacturing facility at Devens

May 16, 2012 in Uncategorized by Rheumatoid Arthritis News

Bristol-Myers Squibb Co., a New York-based drug company, said Tuesday that its biologics manufacturing facility in Devens has gotten regulatory approval for the commercial production of Orencia, a treatment for some patients with rheumatoid arthritis.

DNA-covered submicroscopic bead used to deliver genes to treat rheumatoid arthritis

May 16, 2012 in Uncategorized by Rheumatoid Arthritis News

Within a few hours of injecting empty-handed DNA nanoparticles, Georgia Health Sciences University researchers were surprised to see increased expression of an enzyme that calms the immune response.

How Payers View Pfizer Inc.’s Rheumatoid Arthritis Pill

May 15, 2012 in Uncategorized by Rheumatoid Arthritis News

An FDA panel may have recommended a new Pfizer pill for rheumatoid arthritis last week, but of course, the drugmaker must still win over regulators, doctors and payers.

A Comparison of Etanercept and Methotrexate in Patients with Early Rheumatoid Arthritis

May 15, 2012 in Uncategorized by Rheumatoid Arthritis News

343, No. 22. , pp. 1586-1593, doi:10.1056/nejm200011303432201 Etanercept is a soluble tumor necrosis factor receptor fusion protein that binds and inactivates TNF, a proinflammatory cytokine that is overproduced in the joints of patients with rheumatoid arthritis.1 Etanercept reduces disease activity in adults and children with chronic rheumatoid ... (more)

Infliximab for the treatment of early rheumatoid arthritis

May 15, 2012 in Uncategorized by Rheumatoid Arthritis News

Expert Opin. Biol. Ther. In Expert Opinion on Biological Therapy, Vol. 5, No. 3. , pp.

Norfolk group educating people about warning signs of inflammatory arthritis

May 15, 2012 in Uncategorized by Rheumatoid Arthritis News

You only have about three months from experiencing the first symptoms of inflammatory arthritis before you could suffer permanent damage.

Aftermath of the FDA Vote on Pfizer’s RA JAK Inhibitor, Tofacitinib

May 15, 2012 in JAK tofacitinib cp-690550, RA Education, Rheumatoid Arthritis awareness by Kelly Young

After the tofacitinib FDA hearing, the votes are in, false perceptions persist, and patients still need relief.

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 the 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!

Liberty Bell x-ray

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 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 and 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

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

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FDA Committee Recommends RA Drug Despite Cancer Incidence

May 15, 2012 in Uncategorized by Rheumatoid Arthritis News

Pfizer has announced that the Arthritis Advisory Committee of the US Food and Drug Administration has voted 8-2 in favor of approval of the company's investigational drug tofacitinib for the treatment of adults with moderately to severely active rheumatoid arthritis.

Arthritis treatment includes exercise

May 15, 2012 in Uncategorized by Rheumatoid Arthritis News

May is Arthritis Awareness Month. There are many types, but the two most common forms are osteoarthritis and rheumatoid arthritis.

Novel drug candidates offer new route to controlling inflammation

May 15, 2012 in Uncategorized by Rheumatoid Arthritis News

An international team created drug candidates based on the naturally occurring C3a peptide, the chain of molecules shown here.

by RA Guy

Libby Schou-Kristensen

May 14, 2012 in Real Profiles Of RA by RA Guy

Real Profiles of Rheumatoid Arthritis Photos © Libby Schou-Kristensen Name? Libby Schou-Kristensen Age? 52 Location? Mtunzini, North Coast of Kwazulu-Natal, South Africa How long have you lived with RA? 32 years. What advice would you give to someone who has just been diagnosed with RA? Seek honesty and hope — I was diagnosed at age 20 [...]

Leaving It All on the Field: Not the Safest Choice But Maybe Best

May 14, 2012 in Living with chronic illness like RA, Professional patient, RA Education by Kelly Young

Sightseeing, small steps, and sleep

KB_Kelly_Randy_FDA_AACI’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.

Kelly FDA AAC 2012

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

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Local Buzz, May 12: Workshop targets health conditions

May 12, 2012 in Uncategorized by Rheumatoid Arthritis News

Dr. Nazee Rofagha will offer a lecture Thursday detailing a new solution for alleviating conditions like fibromyalgia, rheumatoid arthritis, migraines,chronic fatigue syndrome, chronic numbness and reflex sympathetic dystrophy.

Rising obesity rates might mean more rheumatoid arthritis

May 12, 2012 in Uncategorized by Rheumatoid Arthritis News

FRIDAY, May 4 -- A new study suggests that severe weight gain might raise the risk for rheumatoid arthritis -- a painful, chronic ailment -- especially among obese women.

Rising obesity rates might mean more rheumatoid arthritis

May 12, 2012 in Uncategorized by Rheumatoid Arthritis News

Email vacations while on the job could benefit people's health, reducing stress levels and contributing to better focus, a new study suggests.

A "promising time" for lupus research

May 12, 2012 in Uncategorized by Rheumatoid Arthritis News

HealthDay News has a nice round-up today of the latest in the diagnosis and treatmentA of the autoimmune disease lupus .