Riluzole anyone?

[MomWithOCDSon]

went to pick up the script and couldnt get it.Seems its 2,000 dollars and my insurance want to talk to the dr pre auth.So cant start until next tweek.bummer.I asked danny if he wanted to try it hes so cute he said what the heck ,cant hurt.Gotta love him. I hate to start a med when things are so good.Kindof just want to leave well enough alone ya know.But we still see him getting stuck in his own thoughts and that causes him some frusteration.

 

Funny though the phamisist said she has never dispenced this medication.She asked me what its for and when I told her she was like never heard of this being used for that,and that its probably not approved .

 

Melanie

Unfortunately, given the speed at which the FDA and our insurance companies work, my guess is that it ISN'T approved by either for anything other than Lou Gehrig's Disease (ALS) at present. So the use for OCD is "off-label," which means your insurance company can probably deny covering it.

[NancyD]

My insurance covered it fully for 3-4 months without questioning. Think I had BCBS PPO at the time.

 

Nancy

 

went to pick up the script and couldnt get it.Seems its 2,000 dollars and my insurance want to talk to the dr pre auth.So cant start until next tweek.bummer.I asked danny if he wanted to try it hes so cute he said what the heck ,cant hurt.Gotta love him. I hate to start a med when things are so good.Kindof just want to leave well enough alone ya know.But we still see him getting stuck in his own thoughts and that causes him some frusteration.

 

Funny though the phamisist said she has never dispenced this medication.She asked me what its for and when I told her she was like never heard of this being used for that,and that its probably not approved .

 

Melanie

Unfortunately, given the speed at which the FDA and our insurance companies work, my guess is that it ISN'T approved by either for anything other than Lou Gehrig's Disease (ALS) at present. So the use for OCD is "off-label," which means your insurance company can probably deny covering it.

[Guest alyssa]

Melanie,

 

We tried Riluzole in early 2008 for 3 months following NIMH protocol and did not see any changes so we started to go off it VERY SLOWLY and it caused an overnight onset of THE MOST HORRIBLE non-stop motor and vocal tics. Nothing helped the tics until we started IVIg. Please keep in mind, NIMH clinical trials did not include OCD symptoms related to PANDAS, Lyme, or other co-infections. Have you ruled out Lyme, Babesia, Bartonella, and Mycoplasma yet? If not, I would do that first. IVIg did not help my DD's OCD or anxiety either but we just found out she has LD and possibly other co-infections so we are starting to treat that.

 

Nancy

 

 

Hi Nancy,

 

I've been rereading your post, and have to say that your experience with Riluzole is really interesting to me. I have a couple of questions for you, I hope you don't mind. Given the fact that the IVIG helped calm the tics in your child wouldn’t that naturally indicate that the cause of them was autoimmune and not drug related? Could it have maybe been a strep infection/ other infection? (titers don't always rise) - That would explain the "overnight" exacerbation of symptoms. From what I could find online, there is nothing about Nystmygus and glutamate linked together. I did however read that it can appear post a strep infection.

 

Perhaps I'm mistaken but I’ve heard Riluzole has only had positive effects and I was really hoping to try it for myself. I’m not sure whether or not tics complicate things when treating OCD, however in PANDAS the neurological symptoms (whether OCD or tics etc.) are caused by antibodies which interfere with neuronal signaling, most notably with glutamate. Right? If the root of the problem is glutamate for both, logically wouldn’t Riluzole help reduce both the tics and OCD? Furthermore, based on personal experience (because I have PANDAS) I can comment a little on coming off drugs. Of course every child is different however each time that I had a negative reaction to something, it was as soon as I took it. Symptoms usually resolved after the drug was stopped and it was out of my system. If from the start, you didn’t notice a bad reaction it makes no sense that tapering off of it would induce a negative reaction. Have you tried anything else that helps with glutamate and had the same reaction? Have you tried NAC at all? I'm really curious to know your experience.

[nevergiveup]

Melanie, Maybe you can try NAC since it has similiar mechanism, if you see it helpful then it may be an indicator the riluzole will help. I put my dd on NAC and within 4 days she was a complete mess, lots of hyperness and tics appeared. So waited a month and tried again and had same results. Never have seen this in my dd before with amy drug or supplement, but I think it is a clue to what is going on, why would NAC stimulate tics?? Increasing glutamate does what to dopamine?

[melanie]

???? Now im confused..I couldnt fill the script,Bcbs said off label My Psy will file with them but hes not using it yet..What about NAC??

[NancyD]

Unlike Riluzole, we found NAC to help DD with OCD and it did not ignite any tics. You won't need a script for NAC. DD used to get monhly combo glutathione/NAC infusions but now just NAC supplements. It's worth a try. I would start slowly and then increase.

 

???? Now im confused..I couldnt fill the script,Bcbs said off label My Psy will file with them but hes not using it yet..What about NAC??

[melanie]

I think I tried that and he had alot of hot flashes

 

Melanie

[Fixit]

Melanie, Maybe you can try NAC since it has similiar mechanism, if you see it helpful then it may be an indicator the riluzole will help. I put my dd on NAC and within 4 days she was a complete mess, lots of hyperness and tics appeared. So waited a month and tried again and had same results. Never have seen this in my dd before with amy drug or supplement, but I think it is a clue to what is going on, why would NAC stimulate tics?? Increasing glutamate does what to dopamine?

 

can someone answer that?? what does an increase in glutamate do to dopamine..

but is this 2 parts..

on cunningham there is dopamaine 1 and 2...would it effect them the same or differently???

and/or are these not related as they are anti dop1 and anti-dop2

 

i've been giving 375mg in morning...

and aller-max after school the last 2 days..(has 200mg nac)

the last 2 nights ds cannot fall asleep ..up till 3 am...

things are good...but teacher has mentioned real lack of focus...not sure if i can just pinpiont that 2 the last 2 weeks..started it 20 days ago

 

i will not give allerm-ax today to see if better..but there is no school, so he might something going on there i don't know about??

Edited October 29, 2010 by Fixit

[MomWithOCDSon]

Melanie, Maybe you can try NAC since it has similiar mechanism, if you see it helpful then it may be an indicator the riluzole will help. I put my dd on NAC and within 4 days she was a complete mess, lots of hyperness and tics appeared. So waited a month and tried again and had same results. Never have seen this in my dd before with amy drug or supplement, but I think it is a clue to what is going on, why would NAC stimulate tics?? Increasing glutamate does what to dopamine?

 

can someone answer that?? what does an increase in glutamate do to dopamine..

but is this 2 parts..

on cunningham there is dopamaine 1 and 2...would it effect them the same or differently???

and/or are these not related as they are anti dop1 and anti-dop2

 

i've been giving 375mg in morning...

and aller-max after school the last 2 days..(has 200mg nac)

the last 2 nights ds cannot fall asleep ..up till 3 am...

things are good...but teacher has mentioned real lack of focus...not sure if i can just pinpiont that 2 the last 2 weeks..started it 20 days ago

 

i will not give allerm-ax today to see if better..but there is no school, so he might something going on there i don't know about??

 

I'm still trying to wrap my brain around it, but sort of like dopamine levels, it's less about more or less glutamate than it is about glutamate modulation . . . I think. What's fascinated me is that, in an OCD study at Case Western University, they did brain imaging that revealed that, in kids with OCD, there were excessive amounts of glutamate in the caudate nucleus, a particular sector of the basal ganglia. And in Swedo's presentation at the AO conference, she, too, showed a slide of the caudate nucleus of a PANDAS kid and highlighted the fact that the caudate nucleus was larger/inflamed, as compared to a non-PANDAS kid. Sort of a coincidence, isn't it?!

[Fixit]

Melanie, Maybe you can try NAC since it has similiar mechanism, if you see it helpful then it may be an indicator the riluzole will help. I put my dd on NAC and within 4 days she was a complete mess, lots of hyperness and tics appeared. So waited a month and tried again and had same results. Never have seen this in my dd before with amy drug or supplement, but I think it is a clue to what is going on, why would NAC stimulate tics?? Increasing glutamate does what to dopamine?

 

can someone answer that?? what does an increase in glutamate do to dopamine..

but is this 2 parts..

on cunningham there is dopamaine 1 and 2...would it effect them the same or differently???

and/or are these not related as they are anti dop1 and anti-dop2

 

i've been giving 375mg in morning...

and aller-max after school the last 2 days..(has 200mg nac)

the last 2 nights ds cannot fall asleep ..up till 3 am...

things are good...but teacher has mentioned real lack of focus...not sure if i can just pinpiont that 2 the last 2 weeks..started it 20 days ago

 

i will not give allerm-ax today to see if better..but there is no school, so he might something going on there i don't know about??

 

I'm still trying to wrap my brain around it, but sort of like dopamine levels, it's less about more or less glutamate than it is about glutamate modulation . . . I think. What's fascinated me is that, in an OCD study at Case Western University, they did brain imaging that revealed that, in kids with OCD, there were excessive amounts of glutamate in the caudate nucleus, a particular sector of the basal ganglia. And in Swedo's presentation at the AO conference, she, too, showed a slide of the caudate nucleus of a PANDAS kid and highlighted the fact that the caudate nucleus was larger/inflamed, as compared to a non-PANDAS kid. Sort of a coincidence, isn't it?!

 

when swedo said pandas...does that include the spectrum of conditions or just ocd version in this particular case>>>

so...could it be the body is actually producinge enough glutamate but it is getting stuck in the caudate nucleus (maybe because it is a swollan sponge)and glutamate is not getting everywhere it needs to go(not enough for reuptake)... therefore your asking the body to produce more by giving it nac, to have excess that can travel to other areas....

or do i have no idea of what you are possibly hinting or what i am saying..and my theory is ####

[MomWithOCDSon]

when swedo said pandas...does that include the spectrum of conditions or just ocd version in this particular case>>>

so...could it be the body is actually producinge enough glutamate but it is getting stuck in the caudate nucleus (maybe because it is a swollan sponge)and glutamate is not getting everywhere it needs to go(not enough for reuptake)... therefore your asking the body to produce more by giving it nac, to have excess that can travel to other areas....

or do i have no idea of what you are possibly hinting or what i am saying..and my theory is ####

 

Actually, what I've read is that NAC supposedly counteracts the glutamate hyperactivity thought to be present in OCD, so that should mean that NAC somehow either neutralizes or "redirects" glutamate in problematic areas of the brain . . . so the caudate nucleus? Riluzole is similarly noted to be a "glutamate agonist" and have an "antiglutamate action." So, presumably, use of either of these would reduce the impact of glutamate in the brain overall and, if Western Case is correct and folks with OCD have too much glutamate in the caudate nucleus, reduce the amount of glutamate there, as well and hopefully reduce OCD behaviors as a result. The remaining question for me, then, might be . . . and this might pertain to your questions as to your child's lack of focus and whether or not that's somehow related to the NAC dose . . . what might be the impact of overall glutamate reduction in the brain? Could there be negative consequences to that? If you have OCD, perhaps you want less of it winding up in the caudate, but do you want less of it overall? Does it need to be "redirected" rather than reduced?

 

Yes, Swedo's slide was about PANDAS as a general condition, at least as presented in her speech; she really didn't get into the varying manifestations. I just found the correlation between CW's over-glutamated caudate and Swedo's swollen caudate interesting because one study was supposedly addressing "regular OCD" while the other was addressing PANDAS. I guess in my mind, the "coincidence" lends some credence to my layman's idea that there's really no such thing as "regular OCD" and that many of these psychiatric/behavioral issues are due to inflammation in the brain.

 

So now, is it a "chicken and egg" argument? Is the caudate swollen because there's too much glutamate in there? Or is there too much glutamate in there because the caudate is inflamed and thereby presents a more expansive area in which the glutamate can collect? If we reduce the glutamate in the brain, will the caudate inflammation reduce? Or do we need to reduce the inflammation so that there's less caudate for the glutamate to collect in?

[nevergiveup]

What makes you think inflammation means "lots of glutamate". You know Leckman found in TS that caudate and putamen (spelling) enlarged was an indicator for poor prognosis in TS. If both nac and riluzole are glumtamate agonists, how does a glutamate agonist affect dopamine. Do any of Cunninghams anti brain antibodies affect glutamate levels? Is it safe to say antidopamine antibodies disregulate dopamine? What does turbulin or the others disregulate?

[MomWithOCDSon]

What makes you think inflammation means "lots of glutamate". You know Leckman found in TS that caudate and putamen (spelling) enlarged was an indicator for poor prognosis in TS. If both nac and riluzole are glumtamate agonists, how does a glutamate agonist affect dopamine. Do any of Cunninghams anti brain antibodies affect glutamate levels? Is it safe to say antidopamine antibodies disregulate dopamine? What does turbulin or the others disregulate?

 

I don't know that inflammation means lots of glutamate; I'm basically wondering IF the inflammation Swedo noted is related to the glutamate-filled caudate illustrated in the Case Western brain scans. It's more of a question than a premise.

 

As for glutamate's relationship with dopamine, I know I've seen some papers on glutamate that also mention dopamine, but I'm not sure there's a causal relationship; I'll have to re-read.

 

Also, so far as I've seen in the research anyway, glutamate is referenced with respect to OCD, but not TS specifically. Since there is that "brand" of TS known as tourettic OCD, however, one would think that there could be some relationship. I admittedly haven't followed the TS side of the research much as my household is dealing with other issues.

[Fixit]

 

Actually, what I've read is that NAC supposedly counteracts the glutamate hyperactivity thought to be present in OCD, so that should mean that NAC somehow either neutralizes or "redirects" glutamate in problematic areas of the brain . . . so the caudate nucleus? Riluzole is similarly noted to be a "glutamate agonist" and have an "antiglutamate action." So, presumably, use of either of these would reduce the impact of glutamate in the brain overall and, if Western Case is correct and folks with OCD have too much glutamate in the caudate nucleus, reduce the amount of glutamate there, as well and hopefully reduce OCD behaviors as a result. The remaining question for me, then, might be . . . and this might pertain to your questions as to your child's lack of focus and whether or not that's somehow related to the NAC dose . . . what might be the impact of overall glutamate reduction in the brain? Could there be negative consequences to that? If you have OCD, perhaps you want less of it winding up in the caudate, but do you want less of it overall? Does it need to be "redirected" rather than reduced?

 

Yes, Swedo's slide was about PANDAS as a general condition, at least as presented in her speech; she really didn't get into the varying manifestations. I just found the correlation between CW's over-glutamated caudate and Swedo's swollen caudate interesting because one study was supposedly addressing "regular OCD" while the other was addressing PANDAS. I guess in my mind, the "coincidence" lends some credence to my layman's idea that there's really no such thing as "regular OCD" and that many of these psychiatric/behavioral issues are due to inflammation in the brain.

 

So now, is it a "chicken and egg" argument? Is the caudate swollen because there's too much glutamate in there? Or is there too much glutamate in there because the caudate is inflamed and thereby presents a more expansive area in which the glutamate can collect? If we reduce the glutamate in the brain, will the caudate inflammation reduce? Or do we need to reduce the inflammation so that there's less caudate for the glutamate to collect in?

 

 

Well..as mentioned by someone...if ocd is an over focus on something...and nac helps to de-focus...i guess there would lies my answer as far as his lack of focus..

since this last onset ,1 1/2 years we have had some trich problems...prior to this onset..it was solely tics that would remit 4 weeks abx...so i think it was myco p this time and got further into system..more systemic, it feels like....

with that..i've been wondering if his tics of late have been ocd in nature, where once the tic is triggered by a sensatoin, he has to then get it just right...(this is me observing...he won't talk about it...hates to talk about it)...

anyway...don't want to report just yet..(sorry i'm always saying that,,but seems to be a good idea for me so far)..we are doing a couple of other things...and !