I’m just curious why everyone on here is not taking vancomycin?
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That seems like quite a privileged/entitled view?
Vanco costs a lot of money so people may not be able to afford it.
Their insurance may not cover it.
Their doctor may not believe in its use and/or prescribe it.
It may not be used for PSC in the country they live in.
They may be too old and/or too advanced in the disease process for it to be considered a viable option.
100% agree. It’s not black and white, and will never be. It’s also a matter of personal choice, just like any other disease.
I think this is a fair question, from the scientific/research point of view. Since it is the only medication out there with evidence of stopping/slowing the progression of the disease, at least for a subset of patients.
I do agree there are other factors (like the ones mentioned). Most commonly, many doctors won’t prescribe it since it’s off-label, and it can be difficult to get ahold of in other countries.
But from a health perspective, I think it’s a valid question. Perhaps a more accurate question is why isn’t every doctor allowing their patients to at least try it. I agree that it’s a personal decision for every patient. But I’m a firm believer that every patient should have the option to try it if they wish.
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If you want to get on vancomycin, please Contact Cynthia Buness , You can find her on Facebook. She is a PSC advocate. She knows everything.
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I agree that it’s a fair question. I have not pursued the medication because I am lucky to have a mild course of PSC that has remained stable for 17 years. I’m 69 so hope to ride it out.
They might want to consider trialing it and see if they are responsive!
WTM, fingers crossed!