[zamnos]

Dissatisfied is one thing. Wouldn't you rather not spend your days having flares at all though? A trip down to Mexico and, like, $50k for a stem cell treatment (HSCT) could be the cure for your ills. It's definitely not got FDA approval, and your mainstream doctor definitely going to advise you against it. And I'm some random Internet commenter so definitely don't remotely read this as treatment advice. But next time you have a flare up, tell me what you wouldn't do to never have them again.

[neltnerb]

I think a lot of this is the feeling that one's own case is special or that you will get a better than median outcome. I want treatment that, for median cases similar to mine, improves things with a high enough success rate and low enough side effect rate that it's not a difficult call anymore.

And if the treatment is $50k in another country there's no reason that pharmaceutical companies in the US wouldn't pursue it as a treatment, so there's not the same argument as there is with supplements where they simply don't have funded studies. They'd want to upcharge it to $500k I'm sure, but I think the profit motive would be there for them to make it available.

If there's a complex and expensive surgery that might fix a problem, I guarantee there is funding available to make sure it's actually safe and won't give me a brain infection or something. If it could be solved with supplements, the issue is that there's no one funding such research but my doctor also doesn't object to taking stuff that might work. Like curcumin and R-Lipolic acid, and have been actively told to take D3. No harm likely, probably not helping but why not?

Neither of these cases seem like they involve the FDA, so I'm just super confused. The two people replying here seem to both be under the impression that the FDA drives the profit motives for pharmaceutical companies or stop people from taking random supplements so long as they aren't known to hurt you.*

I honestly do not have a problem trusting that the FDA uses a basically reasonable process to evaluate these things, and that if the treatment was available in the US I have vastly less objection to doing it elsewhere where it costs less.

But this is just me. I've lived through flare ups, and have had this since interferon was all we had to work with. I do not think it is a good idea to assume that you are somehow going to have a better outcome than median. Once my doctor agrees my prognosis is bad enough that the median outcome of a treatment is positive, my opinion changes.

I'm a scientist, maybe other people can't think this way. I think it is a very bad idea to think you are different from average, particularly about things that are certainly out of your control. It's just... it's gambling with your health, double or nothing... but if my family and doctor think it's worth the bet it's a much simpler choice.

I would not try to override my spouse or doctor or family if they felt it was too dangerous to be worth the potential benefit, I think they are much more objective than I am.

* Let's ignore DEA nonsense, it's important but tangential.