Ankylose This! Living with Ankylosing Spondylitis

Friday, August 21, 2009

Man with Ankylosing Spondylitis on Bill Moyers' Journal

This evening's episode of Bill Moyer's Journal featured several Americans struggling with serious health conditions for which they couldn't get adequate treatment because they lacked health insurance. One of them, Carlos Benitez, had been struggling for years with back pain that he was trying to treat with over the counter pain meds. The medications were causing bleeding into the stomach, and his blood loss was so great that he had to be hospitalized and transfused. He was hunched over, had limited neck mobility and had lost seven inches in height. Of course, the minute I saw him, I recognized that he had ankylosing spondylitis, and the diagnosis was confirmed by the doctors that he was able to see as a result of his participation in the documentary.

What surprised me was that the doctors immediately started talking about surgery. he could still drive, and he had some neck mobility. After exploring surgery options in Mexico, he was able to get spinal surgery for free as a result of the documentary. The physicians were able to restore four inches of his height, and he was pain-free several months later.

The structure of the documentary didn't allow them to go into a lot of detail about life with AS. I worry that it left the impression that surgery is a cure. But it was interesting to finally see someone talking about AS on national TV.

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Thursday, August 20, 2009

Health Canada on TNF blockers and cancer in children

Further to this earlier post, Health Canada has issued a safety update on TNF blockers and cancer in children and young adults. (Disclaimer: I work for Health Canada, but only in the correspondence unit.)

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Wednesday, August 19, 2009

Chinese herb better than sulfasalazine

A new study suggests that extracts from a Chinese medicinal plant, Tripterygium wilfordii, may be more effective in treating the symptoms of rheumatoid arthritis than sulfasalazine. While sulfasalazine may not be the first drug that comes to mind for inflammatory arthritis, I was on it for a while myself (when I was trying a few different treatments). Since the treatments for RA are usually directly applicable to ankylosing spondylitis, this may well have some implications for how our disease is treated down the road. The analogy that comes to mind is willow bark and acetylsalicylic acid (Aspirin).

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Saturday, August 15, 2009

New SAA Website

The Spondylitis Association of America announced this week that they've redesigned their website. Not bad.

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Friday, August 07, 2009

FDA links TNF blockers to cancer in children

The U.S. Food and Drug Administration is requiring that TNF blockers have a warning added to their labels indicating an increased risk of cancer in children. "An analysis of U.S. reports of cancer in children and adolescents treated with TNF blockers showed an increased risk of cancer, occurring after 30 months of treatment on average. About half of the cancers were lymphomas, a type of cancer involving cells of the immune system. Some of the reported cancers were fatal." More information from Newsday, the Wall Street Journal and WebMD.

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Monday, August 03, 2009

Generic versions of biologics?

While there are generic equivalents of many chemically based drugs that cost patients a fraction of the brand-name cost (thanks, I suppose, to the original drug patents expiring), this is not the case for the high-cost biologics -- like Enbrel, Humira and Remicade -- that many of us are turning to for relief. That high cost is raising the question of how long brand-name biologics can be exempt from market competition from "biosimilar" or "biogeneric" drugs -- especially in the U.S., where the high cost of drugs and cost containment are a crucial part of the health coverage debate. The Chicago Tribune has the story.

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