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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 17 of 17. This is the beginning of the thread.
Posted by rovers95 on February 5, 2007, at 11:11:08
Hi, thought i wud keep everyone update on my trial of riluzole - took my 1st 50mg tablet this morning, feel a little better, but this is probably a placebo.
I am going to take 50mg twice daily alongside l-theanine and possibly tianeptine (which i may re-add!). Fingers crossed!!!
mark
Posted by Phillipa on February 5, 2007, at 11:19:12
In reply to Riluzole trial day 1., posted by rovers95 on February 5, 2007, at 11:11:08
Is this in the USA? Love Phillipa
Posted by rovers95 on February 5, 2007, at 12:18:00
In reply to Re: Riluzole trial day 1. » rovers95, posted by Phillipa on February 5, 2007, at 11:19:12
> Is this in the USA? Love Phillipa
Nope, in the UK - it is my own trial, not a clinical trial.........oops, shud hav cleared that up!!!!
mark
Posted by SLS on February 6, 2007, at 5:03:34
In reply to Riluzole trial day 1., posted by rovers95 on February 5, 2007, at 11:11:08
> Hi, thought i wud keep everyone update on my trial of riluzole - took my 1st 50mg tablet this morning, feel a little better, but this is probably a placebo.
>
> I am going to take 50mg twice daily alongside l-theanine and possibly tianeptine (which i may re-add!). Fingers crossed!!!
Mine too!Good luck.
- Scott
Posted by ed_uk on February 6, 2007, at 15:02:35
In reply to Re: Riluzole trial day 1., posted by rovers95 on February 5, 2007, at 12:18:00
Hi Mark
Did you buy the riluzole on the internet?
Ed
Posted by rovers95 on February 6, 2007, at 15:45:54
In reply to Re: Riluzole trial day 1., posted by ed_uk on February 6, 2007, at 15:02:35
> Hi Mark
>
> Did you buy the riluzole on the internet?
>
> EdYeah, it is the only place i cud obtain it cheaper, if the trial goes well, im gona get onto my doc about it (although im 99% sure it wont be available to me on the NHS so i may have to pay?!)
mark
Posted by ed_uk on February 6, 2007, at 17:36:07
In reply to Re: Riluzole trial day 1., posted by rovers95 on February 6, 2007, at 15:45:54
Hi
>I may have to pay?
A private prescription for a box of 56 tablets would set you back about £250.
Ed
Posted by rovers95 on February 6, 2007, at 18:07:21
In reply to Re: Riluzole trial day 1. » rovers95, posted by ed_uk on February 6, 2007, at 17:36:07
> Hi
>
> >I may have to pay?
>
> A private prescription for a box of 56 tablets would set you back about £250.
>
> EdI know, but i used 2 spend at least that amount on beer (when i was well!), obviously it depends on the extent to which it helps - today i am definetly calmer (jus took my 4th tablet!) but we wil see!!!
mark
Posted by notfred on February 6, 2007, at 18:55:28
In reply to Re: Riluzole trial day 1., posted by rovers95 on February 6, 2007, at 15:45:54
" (although im 99% sure it wont be available to me on the NHS so i may have to pay?!)"
http://en.wikipedia.org/wiki/Riluzole"In the UK riluzole has been available through the NHS since 1997 at a standard dosage of 50mg twice daily."
Posted by rovers95 on February 6, 2007, at 19:20:08
In reply to Re: Riluzole trial day 1., posted by notfred on February 6, 2007, at 18:55:28
> " (although im 99% sure it wont be available to me on the NHS so i may have to pay?!)"
>
>
> http://en.wikipedia.org/wiki/Riluzole
>
> "In the UK riluzole has been available through the NHS since 1997 at a standard dosage of 50mg twice daily."I meant in the respect that my doc wont let me have something "off-label" over the NHS at a cost of £10 a day - but i will see!!!
mark
Posted by ed_uk on February 7, 2007, at 15:13:43
In reply to Re: Riluzole trial day 1., posted by notfred on February 6, 2007, at 18:55:28
>In the UK riluzole has been available through the NHS since 1997 at a standard dosage of 50mg twice daily
Yes, but it's prescribed to treat ALS, not depression. Off-label prescribing of exceptionally expensive drugs is not common on the NHS, especially in cases such as this when there is so little evidence of efficacy.
Posted by rovers95 on February 7, 2007, at 19:26:51
In reply to Re: Riluzole trial day 1. » notfred, posted by ed_uk on February 7, 2007, at 15:13:43
Wel its the end of day 3 and ive just took my 6th tablet, nothing as yet - maybe just being impatient!!
Does anyone know how long i should wait for results, im thinkin bout 2 weeks?? Or maybe 50mg a day is not enough - but i don't think i can afford to go any higher!!!
mark
Posted by notfred on February 7, 2007, at 19:32:53
In reply to Re: Riluzole trial day 1. » notfred, posted by ed_uk on February 7, 2007, at 15:13:43
" Yes, but it's prescribed to treat ALS, not depression. Off-label prescribing of exceptionally expensive drugs is not common on the NHS, especially in cases such as this when there is so little evidence of efficacy."
Yep, much the same for those on insurance here.
That seems to me to be a reasonble policy.
Posted by notfred on February 7, 2007, at 19:52:16
In reply to Re: Riluzole trial day 3, posted by rovers95 on February 7, 2007, at 19:26:51
You might want to look at these case studies:
http://ajp.psychiatryonline.org/cgi/content/full/161/11/2132
Posted by rovers95 on February 9, 2007, at 13:09:49
In reply to Re: Riluzole trial day 3, posted by notfred on February 7, 2007, at 19:52:16
Nothing as of yet, sometimes i have flashes that this stuff is working - but it could be a placebo!!! i'm gona give it 3 weeks, the next 2 at 150mg............im really dissapointed bout this so far, really thought it would work for me!!!
mark
Posted by Iansf on February 9, 2007, at 16:43:27
In reply to Riluzole trial day 5.........stil waiting!!!!, posted by rovers95 on February 9, 2007, at 13:09:49
> Nothing as of yet, sometimes i have flashes that this stuff is working - but it could be a placebo!!! i'm gona give it 3 weeks, the next 2 at 150mg............im really dissapointed bout this so far, really thought it would work for me!!!
>
> markI don't know much about riluzole, but standard antidepressants take anywhere from two to six weeks to take effect. I realize riluzole is not classified as an antidepressant and presumably operates differently, but keep in mind that it could take time.
John
Posted by iforgotmypassword on February 12, 2007, at 8:30:20
In reply to Re: Riluzole trial day 5.........stil waiting!!!! » rovers95, posted by Iansf on February 9, 2007, at 16:43:27
as a related drug, i am reporting tinges of something here that may be intepret-able as "working", more like "possibly doing something", but it still has yet to prove it to me as well.
i should also add that i have no idea what i am treating.
perhaps the hierarchy of nmda-antagonists "doing something" is:
#1. ketamine
#2. amantadine
#3. memantine
#4. riluzolei should add that this hierarchy appears to reveal "the less effective the med, the higher the price."
given the fact that people seem to survive illicit ketamine use without brain damage *when doing it sparingly*, i propose that nmda antagonists are prescribed at dissociative levels and are TITRATED DOWN FROM THERE, rather than up. cure the ketamine disability, and pinpoint optimal functionning from there. doctors dont have enough motivation to treat dismal quality of life. after all, THAT IS SUBJECTIVE, RIGHT?
This is the end of the thread.
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