Let’s start 2024 with some good news.
First up is this research that suggests burosumab treatment may improve the dental issues of XLH, even in adult teeth. https://www.nature.com/articles/s41368-023-00259-8#Sec2 That’s pretty shocking to me, since adult teeth form and mineralize in childhood, so I didn’t think it was even possible for them to fill in the overly large pulp chambers after childhood. It doesn’t seem like something the body would even know how to do, since it’s not something normally required. It’s a tiny study, more of a proof of concept for a broader study, but if that larger study confirms the results, it’s really good news!
Next, a new update to a reference material for XLH has, for the first time that I’ve seen anywhere, FINALLY listed burosumab first in the options for treatment. For too long, most articles that cover treatment optionshave started their discussion by saying, in essence, some version of “Conventional/standard treatment involves phosphorus and calcitriol supplements, but there’s also this new treatment, burosumab.” This newly published update flips the script, so it’s more like, “First, there’s burosumab, which gets to the root of the problem, but if you can’t get burosumab, the old treatment may be an option, except it’s got bad side effects.” It’s beyond time for this change, so it’s good to see reality starting to be recognized by the medical community. Burosumab has been commercially available since 2018 (six years in April), and the research has been clear and unanimous all along that burosumab is far superior, with fewer serious side effects.
Those are both big, positive steps forward, so I’ll leave it there. I hope your new year has been full of good news!
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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