Zulresso will be available this month as a 60 hr IV infusion. For those of you who don’t know, Zulresso, i.e. Brexanolone, is IV Allopregnanonolone which was made for the treatment of post part depression. I was wondering if there are any wealthy sufferers here who are considering trying it. It costs $30K just for the medication and you will also need to cover the expensive of staying in a facility for 60 hrs as this is off label usage for PFS.
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It amazes me how the thread on Tribulus is bustling with activity simply because one person says he recovered from it. Many have tried Tribulus (including me) without recovery. Here is a new treatment that’s never been tried before.
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If someone wants to do a fundraiser to use this on PFS patients and it’s paid for as a trail test I’ll be a guinea pig!!!
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This literally has not been tried before. That 5a-DHP crap sold online is garbage. As is the Allopregnanolone nasal spray. That stuff was pure snake oil. The reason they need IV infusion is because of the short half-life. I don’t have any money but if someone is willing to donate to the foundation I’d gladly go trial it.
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Also would this be a one time deal or would we have to continue to get this treatment over time???
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The clinical trials for post partum depression showed it a one time thing. That the antidepressant effects last forever.
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Do you think this could potentially help other sides or just the mental??
I’d try it either way
I can’t say for sure. However, I feel like it’s worth trying this as this has not been tried before. It should address the depression for sure. But Allopregnanolone has many down stream effects and studies have shown its also involved in regulating sexual behavior so it may affect that as well. It’s a much better idea than trying fucking Tribulus and the other bullshit supplements that people are trying again and again for years without any benefit.
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I feel like it’d be really hard to get a doctor to inject this into you in an off-label manner (perhaps even less than off-label since there is no evidence of it working on PFS…) because of the risks the doctor is taking on and the costs, of course. But with that said, perhaps there is a doctor or researcher the Foundation could connect us with that might have a connection to provide this for us under a study or something?
Email the Foundation, and see what they say, man!
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I would need to confirm this, but I heard that Dr. Goldstein in San Diego may be willing to try this on a few patients.
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You have nothing to lose by confirming that information, man! Go ahead and find that out for yourself. In this condition and the discovery of stuff, we have to do the dirty work of everything. Including “marketing” of the disease, fundraising, researching… It sucks but that’s what we’re stuck with.
I can confirm it, but I don’t have that kind of money for treatment. If there is a wealthy PFS sufferer who’s willing to try it that would be best.
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Could you email him and ask him if there is some sort of study he could run with grant money that would allow you to participate in it free of charge? He might be interested in that as he has research he could publish and possibly be the first doctor to cure PFS. I could see this being lucrative for a doctor!
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It acts as an anti-depressant. Many PFS guys are depressed, so I don’t see any reason why they would oppose it’s use.
Docs may not be using it on us because it’s use would be off-label. It’s only approved by the FDA in post partum depression.
Docs can use medication for off label use without difficulty. Goldstein himself has tried a few medications used for depression and other health issues to try to treat PFS. Its just the logistics of having to be monitored in a hospital for a 60 hr IV infusion which complicates this situation. You would pretty much have to pay out of pocket for everything I imagine.
Could we get some people to try this, instead of all the stuff people are using nowadays that were proven to be useless? I’m willing to donate for it.
I too would be interested to see if it improves people, but we have to ask, is this a good use of tens of thousands of dollars?
In a best case scenario it will improve the single person who undertook it (lacking statistical significance as it’s a single person). Few others will be able to afford the treatment at this stage.
Worst case scenario it won’t even benefit that individual, and the money will be blown. This money would be better channelled into further research into the condition.
At least we’ll have an immediate result, instead of having to wait for 5+ years as often happens with studies. Also, maybe there are some who have the money to have it done themselves?
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I dont see how this could possibly be a one time use.