11 replies to this topic

[penisbreath]

i wasn't really sure the best place to post this. anyway, some of you are probably familiar with me from my posts here and at mindandmuscle over the years: i suffer severe, treatment-refractory OCD. i recently contacted the Yale research clinic regarding my case and it was suggested I trial Riluzole.

unfortunately, the drug is rather expensive and i am unable to work currently, do not quality for any form of disability (not a citizen), and am living in a country where meds are not covered by insurance.

i am trying to raise a modest amount for a 3-4 month trial of the drug, at which point, permitting it enables me to return to some form of casual/part-time work, i will endeavor to finance it myself.

if anyone would be willing to read this and contribute a small amount, i would dearly, dearly appreciate it!

http://www.gofundme.com/3d99rk

[socialpiranha]

shblamp

[Default8]

I can't help financially but I would love to hear some anecdotal experiences if you make the goal. It seems to be a very promising drug and hopefully it won't stay so expensive for long now that it's generic.

[penisbreath]

yes, i'll definitely post a log of my experience ..

are you referring to the Sun Pharma generic, Default8? there actually does seem to be another generic stocked by various Canadian pharmacies, but it still ends up costing around $400+ a month.

I spoke to the company that manufactures the drug and they said they do provide patient assistance in exceptional circumstances, so my hope is perhaps that if I do manage to try it and it goes well, I may qualify (having been on just about every other pharmaceutical on the planet without success).

[Default8]

I was more referring to it only recently becoming generic. I can only assume that in time any generic drug will get cheaper especially with Riluzole's appeal for many conditions. All the best with the trail and I look forward to hearing what you find. Have you tried Memantine? Riluzole may have similar effects although wikipedia says this is controversial.

[penisbreath]

yeah I did try Memantine, but it worsened my anxiety/obsessions unfortunately -- NMDA antagonism doesn't seem to agree with me. Riluzole alters glutamate through a different mechanism, so I'm hopeful

[socialpiranha]

I think riluzole mods glutamate through sodium channel blockade, if i'm not mistaken...similarly to lamotrigine. I can't remember lucky if you had tried lamotrigine or not? if not i would recommend it, it may have saved my life many times over a particularly hard two year period(house arrest).Out of the over one hundred drugs i've tried, I would rate it fourth place for therapeutic value in terms of obsessive thinking etc. Just behind benzodiazepines, nicotine and buprenorphine. If you consider side effects and addiction I would rate it number one.

I still have hope that riluzole would be a better version of lamotrigine with less side effects and other benefits due to its pharmacology, hopefully that is the case but in the meantime if you haven't tried lamotrigine you should really give it a try.

[penisbreath]

thanks. i haven't actually tried lamitrogine, but i'll keep it in mind if riluzole doesn't work out. anyway who was douchey enough to rate my post a -1?

i called sanofi the other day and they have a patient assistance program here where the drug is provided free in exceptional circumstances. i'm hoping if it does alleviate symptoms, i might qualify, since i'd end up remaining on it long-term (whereas most ALS patients take it for 3-4 months before they sadly pass away).

unfortunately the crowdfunder has kind of stalled at 10%, so even if people could chip in $5, $10 it would mean a lot. i'm going to a market next week and selling a bunch of my stuff to try and raise more money

[chemicalambrosia]

Good luck man.

[penisbreath]

thank you dude

[focus83]

bump

[penisbreath]

again thanks to everyone who's helped out, don't think a 3-month supply is realistic so aiming for 2 month which should still be enough to assess the benefits