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Happy Birthday RAW! The Day I Could No Longer Stay Silent

Kelly, Bear, and KB

This week the British Medical Journal published my article which they titled: Doctors’ understanding of rheumatoid disease does not align with patients’ experiences. But first, today is a very special day. Today begins year five of RAW Four years ago today, RA Warrior was born. I’d been studying, writing, and talking to patients for a [...]

Planning Pregnancy with Rheumatoid Arthritis / Disease

Dory fish at dentist office

How Rheumatoid Disease affects pregnancy planning Pregnancy planning is a common challenge for people diagnosed with Rheumatoid Arthritis. Concerns include infertility, disease activity, pain control, and possible disability, which can interfere with caring for a child. Valuable resources include clinical studies and other publications, and the practical stories of other patients. While there is no [...]

Efficacy of Xeljanz, Biologics, & DMARDs in Rheumatoid Disease

ACR20 responses shown as pie chart

Why should I feel like I failed? I’m not alone We probably agree it’s unfair to say, “patients fail treatments” instead of the reverse, but there is still disappointment. I was optimistic that my Rheumatoid disease would respond to Xeljanz, the new oral DMARD (disease modifying anti-rheumatic drug) from Pfizer. Unfortunately, my joint stiffness and [...]

Ciprofloxacin / Fluoroquinolone Tendon Dangers with Rheumatoid Arthritis

rheum risk warning sign

My brief story about ciprofloxacin and Rheumatoid Arthritis I got a kidney infection shortly after starting Enbrel. It was Good Friday 2009. My kidney hurt and fever spiked to 104.5, after 3 days of UTI. Before then, I’d only had a minor UTI  with pregnancy. This is when my GP got the nickname “Good GP” [...]

Livedo reticularis diagnosis – she knelt next to me with a medical textbook

Rheumatology_textbooks_sm

Last week was one of those professional patient weeks, with three doctor’s appointments and a lab visit. “Professional patient” is not something I happily say. It started out in 2009 as a tongue in cheek way to make the most of an annoying phenomenon – spending several whole days per month as a health care [...]

Words of Help From a Friend We’ve Never Met – Until We Do

Leslie and Dave

Isn’t life full of special coincidences? Some even call them “God-incidences.” Circumstances show know that life is not all random, but the right words are often there at the right time – no matter when they were written. A couple of special coincidences occurred in February when I was in Washington. As my friend Leslie [...]

RPF White Paper Indicates Patient Experiences Differ from Typical Perceptions of Rheumatoid Arthritis

unmasking-rheumatoid-disease-white-paper-2

Patient Experience and Rheumatoid Disease This site has always been dedicated to “presenting the patient story in a way that may increase understanding of the disease by doctors and researchers” as one of its three goals. The Onset Story project has been an important part of that, both for patients and for healthcare professionals searching [...]

Xeljanz Rejected by European Medicines Agency

Fig 35 from Tofa FDA briefing

EMA rejects Xeljanz authorization Late yesterday, the European Medicines Agency (EMA) rejected the Pfizer’s application to market Xeljanz (tofacitinib). The EMA application was refused because the Committee for Medicinal Products for Human Use (CHMP) “adopted a negative opinion” on approving Xeljanz, stating they were unconvinced its risks outweighed benefits. Last November, the FDA approved the [...]

Fall Risk Assessment and Intervention with Rheumatoid Arthritis

Midsummer comedy play

First major study in Rheumatoid Arthritis to explore risk factors of falling In a recent study “Risk factors for falls in Adults with Rheumatoid arthritis,” 525 people diagnosed with Rheumatoid Arthritis (RA) were followed for one year to examine risk factors for falling. Thirty-six percent of patients in the study fell at least once during [...]

Health Data Is Like Yogurt: Full of Possibilities

Pinkberry options: mango, gingerbread, pomegranate

Show me the data! Enjoy a laugh with this short adaptation of the legendary “Show me the money” scene from Jerry Maguire created by Dr. Eric Topol of Scripps Translational Science Institute. “Show me the money” has become a kind of motto that also reminds me of Wendy’s old “Where’s the beef?” ads. People want [...]

Men with Rheumatoid Arthritis Carry a Heavy Burden

Five Guys sign

Study recognizes needs of men with Rheumatoid Arthritis A study of 30 Rheumatoid patients indicated that men with Rheumatoid Arthritis may not get the support they need. From my vantage point, I agree. Let’s take a look at the findings of the study, “’It Gets Me Down Every Single Day’: Are Men with Rheumatoid Arthritis [...]

Inadequate & stupid? No, just a victim of someone’s training

car eyelashes

I don’t know where I’ll find the courage to write this. Some stories – my own or others’ – I’ve saved for a book (I’m working on a couple). At first I think, what will happen if I tell this? Then I realize it must be told, because it’s not my story – it’s the [...]

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