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Riluzole?


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I know . . . ridiculously expensive, isn't it?

 

There's a trial going on right now at NIMH for riluzole and kids with treatment-refractory OCD. Don't know if there might not be another running for adults that you might be able to get into? Dr. Michael Grant at NIMH is, I believe, heading up the pediatric study so you might try reaching him through the NIMH.

 

Our psych prefers to wait for peer-reviewed research to be completed before using drugs off-label, so while she's willing to prescribe riluzole if all other interventions fail, she's reserving it for now. Same with memantine, so we've not tried either.

 

Have you tried lamictal? It is an anti-seizure med which is also thought to be glutamate modulatory, and it has been helpful to our DS. Not so much diminishes the OCD as it diminishes his attachment to the OCD thoughts/rules. So he can be more objective about some of those thoughts and behaviors and obey his logical, non-OCD mind rather than the OCD thoughts. It might be worth a try (and it is available in a generic, which helps keep the cost down).

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Thanks MWOCDS .. I searched the archives and there are a couple of positive reports re: Riluzole. Unfortunately I'm not in the US, so wouldn't be able to enter any NIMH trials. What's worse is insurance doesn't cover medication at all here, so i'd be paying completely out-of-pocket. The cheapest source I could find was a UK generic for $350 a month.

 

Lamictal is one of the few psych drugs I haven't been on. I've read mixed things regarding its efficacy in OCD -- it seems to either help or exacerbate symptoms. I'll speak to my doctor about it, though given the severity of my symptoms, I really need something potent. There are only a handful of studies on Riluzole, but they sound really promising.

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