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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 8 of 8. This is the beginning of the thread.
Posted by uncouth on April 25, 2009, at 17:40:46
Took a gander through the archives, but was wondering if anyone has any new updates, treatment experiences, results positive/negative with RILUZOLE? Just got my trial box of 56 x 50mg tablets today. Taking 2x/day for my severe, treatment-resistant (possibly bipolar) major depression, that has so far been refractory to 150mg of Nortriptyline, 375mg of Effexor, and 19 sessions of ECT, 13 of which were bilateral.
I need help otherwise i'm going to kill myself within the next few weeks, I fear.
Posted by SLS on April 25, 2009, at 18:43:42
In reply to Any new update on Rilutek / Riluzole?, posted by uncouth on April 25, 2009, at 17:40:46
> Took a gander through the archives, but was wondering if anyone has any new updates, treatment experiences, results positive/negative with RILUZOLE? Just got my trial box of 56 x 50mg tablets today. Taking 2x/day for my severe, treatment-resistant (possibly bipolar) major depression, that has so far been refractory to 150mg of Nortriptyline, 375mg of Effexor, and 19 sessions of ECT, 13 of which were bilateral.
>
> I need help otherwise i'm going to kill myself within the next few weeks, I fear.
I am glad that you are being so aggressive with your treatment. You are a survivor, and I hope that this attribute will get you through as many drug trials as is necessary to find an effective treatment.I guess you already know that my trial of riluzole was a failure. It didn't help. It didn't hurt.
Why did you become interested in riluzole? Did you have a positive response to lamotrigine?
While you are still on nortriptyline and Effexor, you might want to try adding Wellbutrin and lamotrigine before giving up on that route entirely. It would save a lot of time.
My bipolar depression is currently being treated with:
Parnate 80mg
nortriptyline 150mg
Lamictal 200mg
Abilify 20mg
memantine 20mgI added memantine this week to help me break through a response plateau. There is some work being done by the NIMH looking at bipolar disorder and antiglutamatergic drugs, including lamotrigine, riluzole and memantine. I'll post the results of my memantine trial in a few weeks. I plan on moving up to 40mg if necessary. For now, I am going to give 20mg three weeks before evaluating my response to it.
Try to remain optimistic. There are probably a great many treatments that you have yet to try. Each combination of drugs and dosages is a new trial on its own with the potential to hit the right targets. Perhaps you can list which drugs you have tried and what were the results. Any reaction at all - positive or negative - might provide a clue as to what to do next.
- Scott
Posted by uncouth on April 25, 2009, at 19:25:17
In reply to Re: Any new update on Rilutek / Riluzole? » uncouth, posted by SLS on April 25, 2009, at 18:43:42
THanks, scott. I look up to you and your treatment dilligence and your openness in sharing both now and in the archives.
I was on lamictal monotherapy for a while at 200mg which I didn't consider a success a few years ago, but now I actually realize may have been at least some stability. I never went up higher, which I'm now thinking might be an option.
I did notice your Riluzole trial was a bit of a wash, which I'm sorry about.
My current regime is the following:
150mg Nortriptyline (been on for just a few weeks, but never had all that good results with desipramine so not sure about the TCA class)
75mg Effexor (just tapering down, realized I couldn't get rid of the final 75mg just quite yet this week though)
40mg Memantine (prescribed when i started this course of ECT a few weeks ago, can't tell what affect it's had either way with everything else going on)
100mg Rilutek (starting today)
120mg Geodon
75mg seroquel (for sleep)
7.5mg Deplin
800mg SAMeI was most recently on 375 effexor before we started the ECT, and while high dose Effexor had always worked in the past, this time, it didn't. before the effexor I was pushing 80mg Parnate but had the big idea to replace Parnate with Effexor so I could add back in Adderall (i knew my doc wouldn't rx adderall with parnate), but that switch, along with other events in my life, precipitated this most recent severe depression which put me in hte hospital for a night and through 19 ECTs so far.
SInce I'm having an underwhelming response to Nortriptyline, I'm thinking about potentially adding back Effexor, Parnate, or perhaps milnacipran. I've heard good things about the latter, and at least i know in the past i've had SOME response to effexor and parnate. At least something.
It sucks however not being able to isolate really the one thing that would be causing my improvement with all the things i have going on at once, but i'm pretty sure ECT was helping up until last week somewhat, and i'm pretty underwhelmed so far with Nortriptyline....was expecting 150 of Nortriptyline to be roughly equivalent to 300mg of Effexor and so far not feeling it to be at all.
Thanks and love to you all...scott you are quite brave.
-Alex
Posted by SLS on April 25, 2009, at 19:51:33
In reply to Re: Any new update on Rilutek / Riluzole?, posted by uncouth on April 25, 2009, at 19:25:17
I doubt nortriptyline will be of much use without taking either lamotrigine 200mg or Effexor 300mg.
Your condition sounds a lot like mine.
How do you react to Wellbutrin, Remeron, reboxetine, buspirone, Neurontin, Lyrica, Provigil, Cytomel, protriptyline, or moclobemide?
All of these drugs made me feel substantially worse.
Abilify might be a better augmenter of antidepressants than it is an antipsychotic. I am still undecided about the potential of Abilify to adequately treat schizophrenia. There are plenty of opinions on both sides of that issue.
Thanks for the flattering complements. They are very much appreciated.
- Scott
Posted by uncouth on April 25, 2009, at 20:22:25
In reply to Re: Any new update on Rilutek / Riluzole? » uncouth, posted by SLS on April 25, 2009, at 19:51:33
Wellbutrin was just a partial response, Rememron never got up high enough but now thinking it might be worth trying (f*ck the weight gain if it gives me life back). Never tried any of the others you list besides Provigil which is a nice peppy drug for me but doesn't do much for mood.
WHy wouldn't you expect Nortrip to not be of much use without Lamictal / Effexor? Is there something about it that makes it only work in the context of something else?I was going to give this 150mg Nortrip a go on its own but I don't know if i have time to waste, given your suggestion I may add back in milnacipran or effexor or parnate.
Your combo seems like the Mercedes-Benz of psychotropic cocktails....really top-shelf drugs from each class! I might end up where you're at in a few weeks, that is if i manage to stay alive.
....i think i won't do much of anything right now, though, besides giving Rilutek at least 2 weeks to determine its effectiveness.
One last quesiton Scott -- how did you settle on 200mg of Lamictal-- and was it the last thing you added to the cocktail? Did you ever try it at 300 or 400mg or was 200mg sufficient? What, if anything, was the key element of the cocktail that made it "click" for you. If I remember correctly, 200mg of lamictal was definitely mood stabilizing and provided a "floor" on my mood, but it never hit the anhedonia...distinct rememberences of being out with friends during that time just feeling blah about my life etc....
Posted by Nadezda on April 26, 2009, at 12:17:21
In reply to Any new update on Rilutek / Riluzole?, posted by uncouth on April 25, 2009, at 17:40:46
I use riluzole as an adjunct to Emsam plus provigil. I find it really helps with anxiety and obsessive thinking and seems to improve my outlook quite a bit. I've been able to do many more things since I started taking Emsam, provigil, abilify and riluzole. (Not all at one time, but with some additions and subtractions of other possiblities along the way.) Abilify clearly reduced the obsessive, negative cycles of thought. actually.
I'm not clear what you're taking but depending on the combination-- and your response, probably-- riluzole might help significantly.
It does take a lot of patience and experimenting, I think. I ve been lucky, that after a few trials of ssris my pdoc tried Maois, which are much more effective for me. (I've used parnate and now emsam, which is much better in my case).
I hope for the best for you. If you can hang in there and keep trying, you'll find something that works. It can take a long time, but it's worth it if you can find a way.
Nadezda
Posted by elanor roosevelt on April 27, 2009, at 22:11:31
In reply to Re: Any new update on Rilutek / Riluzole?, posted by uncouth on April 25, 2009, at 19:25:17
perhaps you should stop the Nortriptyline
why didn't you go back on the adderall?
i find it keeps me a half-step ahead of the depressionit's not a reward drug though
you need something that will let you see some light at the end of the tunnel
any particular meds in the past help give you a sense of future?
Posted by uncouth on April 28, 2009, at 13:22:47
In reply to Re: Any new update on Rilutek / Riluzole? » uncouth, posted by Nadezda on April 26, 2009, at 12:17:21
thanks for the updates and suggestions everyone.
hoping that my regime right now will lead to some improvement, including the rilutek. but we'll see.
anyone else out there with ANY info or experiences with rilutek, please add to this thread ASAP!
This is the end of the thread.
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