One of the hacks for getting funding and attention for XLH research is to pitch its potential benefits for health care in general. So, for instance, the more we know about excess FGF23 levels in XLH patients, the more we understand FGF23 in general, and can apply that knowledge to, e.g., cardiac and kidney patients who have messed-up FGF23 levels.
The inverse is sometimes true too, where general research can also benefit the chronic hypophosphatemia community. There’s a new example of just that: “Metformin for Knee Osteoarthritis in Patients With Overweight or Obesity.”
Metformin is a drug primarily used to lower blood sugar levels in patients with type 2 diabetes. It turns out to also be useful for knee osteoarthritis (presumably related to reducing inflammation) in patients with excess weight. Which makes me wonder if it would be useful for XLHers, since we tend to have both excess weight and osteoarthritic knee pain. (Not giving medical advice here, just thinking out loud. If you think it might be useful, check with your clinician, preferably someone with XLH expertise.)
There’s also somewhat mixed evidence that Metformin can reduce the chance of developing long COVID and/or reduce the effects of long COVID. For both this use and the arthritis use, it all seems to come back to the inflammatory effect on the body, but no one really knows HOW the Metformin works, just that it does.
Which brings us back to my original topic—I’d love to see some research on inflammation in chronic hypophosphatemia patients, since I’m pretty sure we’ve got lots of it to study, and what is learned about how inflammation works could then be applied to develop an anti-inflammation treatment that, unlike what we call anti-inflammatories, could be better targeted, with fewer side-effects, which would allow them to be taken indefinitely without damaging organs.
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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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