If you have RA you should consider participating in research on the disease. The National Data Bank for Rheumatic Diseases (NDB) is the largest patient-reported research data bank for rheumatic disorders in the United States. As a RA patient, you can participate in their ongoing studies about the impact of the disease. They give reports at conferences and publish results in peer-reviewed journals. Participation is easy and can be done online. They send a reminder email to complete the survey on a regular basis and they provide a copy of your personal results. Results are confidential. Why should you participate? According to the NDB frequently asked questions website,

The primary reason people give for NDB participation is that they want to contribute to medical research that may help others with their disease. With a debilitating disease like arthritis or other rheumatic conditions it can sometimes be difficult to volunteer in a traditional setting. NDB research allows you to volunteer in an important way. By learning about your condition over time, we hope to give researchers the tools to improve treatment for people with rheumatic conditions and improve their quality of life.”

Please sign up today…http://www.arthritis-research.org/join-research/joining-ndb-research-rheumatoid-arthritis


The Impact of RA on Men

I’m the only male Patient Advocate and Moderator on www.rheumatoidarthritis.net and the corresponding Facebook page. There is a great page on RA and Women’s Health on our website but no corresponding page for men. Of all the people who visit the Facebook page, only 15% of the people reached were men and only 9% of the people who actively engaged by liking, sharing, or commenting on posts were men. All of this is not too surprising given the fact that the ratio of women to men with RA is about 2 to 1.[1] But with approximately 1.5 million people in the United States with RA[2], that would mean that almost half a million men suffer from RA.

When it comes to autoimmune diseases like multiple sclerosis, lupus, scleroderma, rheumatoid arthritis, and Sjogren’s syndrome, women seem to bear the brunt of these diseases in terms of proportion of people impacted. Genetics, behaviors, and hormones…

…read more at http://rheumatoidarthritis.net/living/impact-ra-men/

In an earlier post, I outlined how RA can impact much more than bones including many organs and soft tissues. One group of soft tissues that can be damaged by RA includes those involved with the musculoskeletal system. The musculoskeletal system involves a complex interaction between muscles, bones, joints, and various connective soft tissues – all which can be the target of RA.

Erosion of bone tissues in joints is on of the trademark symptoms of rheumatoid arthritis. Through complex autoimmune biochemical processes, the body’s immune system attacks it’s own tissues like it was a foreign invader. A cascade of signaling chemicals promotes the production of bone cells called osteoclasts that erode bone tissue and surrounding cartilage. This kind of gross damage…

Read more at http://rheumatoidarthritis.net/living/attack-on-connective-tissues/

It’s been a little over six weeks since I had anterior cervical discectomy and fusion (ACDF) surgery. Two herniated discs between vertebrae C5-C7 were removed, bone spurs removed, artificial cages seeded with my own bone tissue inserted in the disc space, and the three vertebrae held together with screws and plates.

The good news is that the numbness and tingling in my fingers are almost completely gone. In addition, the shooting pain down my arms is also a thing of the past. This demonstrates that the pinched nerves were released. The symptoms from the compression of my spinal cord (stenosis), including hand clumsiness, are also gone. Muscle pain and stiffness in the neck and shoulders is much reduced but is still present – that will take some time to get better. I still take some muscle relaxants but have been able to reduce the dose over time and hope to stop taking those soon.

Due to the stress of the surgery put onto the esophagus, it was difficult to swallow food. But that has improved to the point of hardly being an issue. The vocal chords were also impacted and I easily lost my voice for the first few weeks but my voice is back to normal now.

photo (1)A six week follow-up with the neurosurgeon was today. It began with an x-ray of my neck – the first image I’ve seen of the handiwork since the procedure (see pic). It was very interesting to see the screws going into the bone and wondering if those things were actually inside my neck! The good news was that there is early evidence that the bone is fusing and hardware remains in place where it should be.


photoThe scar still looks rather gruesome and garners comments on a regular basis. But I can see a slow reduction in swelling and the original incision shows up as a thin, dark line (see pic). Like with other surgeries, the scar tissue is sensitive to the touch and based on advice from previous surgeon, I try to gently desensitize it by touching it on a regular basis.

I was cleared to for physical therapy and will begin that tomorrow. The purpose of the PT will be to strengthen the neck and arm muscles which have atrophied from the pinched nerves and lack of use over time. I was also cleared to engage in regular activities and lift objects within tolerance. The next follow-up appointment won’t be for six months at which time a CT scan will be done to check the bone fusion.

It’s been a difficult recovery given the nature of the procedure. The surgery set off a flare of rheumatoid arthritis symptoms which are starting to subside. It’s been a wild ride but just this past week I could finally say that I was glad for having the surgery.

The Center for Disease Control (CDC) reports that 18% of Americans currently smoke, and smoking is the leading cause of preventable death in the United States.1 The good news is that the proportion of people who smoke has decreased from 42% in 1965 to the current 18%.2 While we’ve witnessed a dramatic change in public perceptions about, and decreases in overall use of tobacco products over the years, there remains concern about its role in rheumatoid arthritis.

Read the rest of the post at http://rheumatoidarthritis.net/living/role-tobacco-use-ra/

A recent article in the online publication for doctors called Rheumatology Network calls into question the commonly used outcome measures used in RA. The article, titled RA Outcome Measures Made Simple (or Not?), makes the argument that simpler measures of RA activity are needed.

Over the years, numerous measurement tools have been developed to help doctors determine extent of disease activity. These measures include the HAQ, DAS 28, CDAI, ACR 20, and RAPID 3 among others. These survey-type tools usually focus on joint activity, swelling, pain levels, disability. Some, like the DAS 28 (28 refers to 28 joints – the number of RA affected joints), include blood tests in the assessment. An online DAS 28 tool is available for doctors and patients. If you are a RA patient, your rheumatologist may have used one or more of these tools for diagnosis and to monitor treatment effectiveness. These tools are also used for drug development and testing.

Over the years, these measurement tools have been the target of much research in terms of validation and correlation with the disease (e.g. Radner, et al, 2014). Because they have been shown to provide a modicum of usefulness, they remain in vogue by the rheumatology community. However, in spite of their usefulness and relationship with RA disease components, the ability of these surveys to accurately and completely paint a picture of the disease remains in question. A recent study by Cheung et al (2013) demonstrated that doctors and patients sometimes agree, and sometimes disagree on some of these measures. Sometimes doctors and patients completely disagree (see Castrejón, et al, 2014). In a research paper that I helped present at the American College of Rheumatology conference last year, it was found that the commonly used HAQ tool did not always adequately capture disease impact and activity in patients.

When it comes to subjective measures like impacted joints and bodily function, it’s oftentimes difficult to develop tools that measure variables with 100% accuracy. One would like to think that measurements of biological chemicals involved in disease processes would be more accurate, But that is not always the case and they are also difficult to develop with 100% accuracy (see this article). The bottom line is that researchers need to continue to work on developing useful and accurate measures for RA disease activity. Only then can diagnosis and treatment options be maximized.

Going to the dentist is something that many people avoid. In fact, it is estimated that up to 40 million Americans avoid seeing a dentist each year.1 Reasons may include fear of pain, negative past experiences, and embarrassment. That last reason is probably the one that drove me to stay away for almost eight years! During that time, I was diagnosed with rheumatoid arthritis. Given my newfound attention to all things having to do with my body, I finally ventured into my family’s dentist that is literally only two blocks away from my house. Upon examination, the dentist indicated that I had periodontal disease – meaning inflammation around a tooth.2 Risk factors for periodontal disease include having other illness, lack of saliva, and certain medications.

Read the rest at http://rheumatoidarthritis.net/living/dont-avoid-dentist-ra/

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