Avanir/Zenvia after trial use?

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brooksea

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Beth or anyone on the Avanir trial for Emotional Lability -

Have you been told that you could continue the medicine after the trial is over?

Our Neuro wrote a letter to the company requesting continued use, but we haven't heard anything yet.

This stuff has worked great and we hope they will allow it to be prescribed. I know the drugs can be formulated at certain pharmacies, but insurance will not cover.
 
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CJ ... yes, I was told that at the end, they would write a prescription for me.

I had a real problem with the Open Label. The first part of the blind trial was fabulous ... my lability was under control, my energy was up and my mental focus was much sharper. Even my speech improved a little because I could put more energy into it.

When the open label started in December, all that went away. The first bottle was like sugar pills ... the outbursts came back, my energy was kaput, everything gone. The neuros kept telling me that there should not be any difference, but did mention that the same thing had happened to one man in the trial previously, who started having weepy spells again when he went on the open label. I'm on my second bottle of open label, and it has been better. No emotional outbursts till this week, when I REALLY, REALLY lost it and just stood and screamed and shrieked at my husband for 40 minutes. It's so crazy ... your mind is soooooooooo embarrassed but your body won't stop.

(Fortunately, I had one breakdown while I was at the clinic trial appt, and scared hell out of the people conducting the trial. So now they believe me.)

Anyway, I think my issue is dosage related. ... or else a matter of quality control at Avenir. I am going to beg the neuro to write the strongest prescription he can. He said he could have it "made up" for me at a pharmacy, although I understand that it is available already by prescription for diabetic neuropathy.

Can't believe insurance won't pay, when it CLEARLY has a beneficial effect on ALS symptoms. What other meds are there that can do even that? I guess that's what this trial is to determine ... if it can be prescribed for other conditions, like ALS

(Can't believe they wouldn't treat your husband for the thrush because he was on the trial. Mine's being treated by another doctor, so I just e-mailed the trial people that I'm taking a new med ..)
 
Once I completed the clinical trial, I had to enrol as a patient with the neurologist who supervised the study so that he could prescribe it for me ongoing. I pay $130 for a 3-month supply compounded at a local pharmacy.
 
Ok-

We were told last week at Emory that Avanir Pharmaceuticals does not have the funding to continue to supply the patients that would like to keep taking the drug.

As mentioned by Liz, it can be compounded. We cannot afford the expense. Now we find out that the recommended antidepressants that can help with EL are tier 4 drugs on husband's Medicare insurance plan. I must say, this sucks greatly! Emory is going to try to appeal this with the insurance company for us. Otherwise husband will continue to ride around town with gaping goofy smile, bursting with laughter. :shock:
 
Seems to me the insurance company has to cave on this one. It's a necessary med, and there is no "generic" substitute.

Good luck.
 
Thanks Beth! As you are well aware, s@#$ happens!
 
This is a real shame, CJ. Maybe you could plead with the pharmacy to give you the med at a reduced cost.
 
CJ ... I hope Emory is making progress toward getting your husband the meds. I have been on the "compounded" med for a couple weeks now, and it has knocked out the lability. I asked Dr. Graves to write the prescription for the strongest dosage available, as the untreated lability is really as bad as losing my speech. I was afraid to see people or go out ... and I became really angry with my husband, who needs all the support and comfort he can get with his Parkinson's and doesn't need me bouncing off the walls.

I'm paying about $65 a month for the meds from a pharmacy in San Diego. The compounded formula gives me a kind of unpleasant nervousness, but it stops the meltdowns cold.

To me this medicine is critical ... I think your insurance company has to recognize that this is not an optional thing, and these emotional symptoms are worse than people who are not affected can even imagine.

Is this something Guardian Angels could help with?
 
I was hoping more people were on this drug and would lov e to know what improvements they had

pat
 
Pat ... have you tried it yet? I know you were going to get a prescription.

What I'm wondering is whether cutting off the drug once you've started it makes the lability worse. That is what seemed to happen to me. When they changed the dosage and then I had to go a couple weeks without it, I added a couple new emotions to my meltdowns ... rage and laughter ... and the meltdowns were much more intense. I had never had the laughter part before. That's embarrasing!

I don't know if it is simply the disease progressing, or if it's a reaction to stopping the drug once you've started, but fortunately I'm back on it now.

I know some people on Patients Like Me have this intense lability like I do, but don't know if any were in the trial.
 
I wonder if people are being made aware that this drug is available via a Phase III clinical trial. Zenvia's efficacy has been established; they're just tweaking the dosage. I chose this option 1) because I expected, and got, fewer side effects than are associated with antidepressants and 2) because there is some research suggesting that dextromethorphan, the active ingredient in Zenvia, may have more generalized neuroprotective effect.
 
When I first started it, I told my neuro of the other benefits I was experiencing, and she told me that Zenvia has a beneficial effect on the whole bulbar region. It doesn't just zero in on the emotions. So in my case I got an energy boost and some mental focus back. Without it I had huge fatigue and a complete lack of ambition. Couldn't even write out a to-do list, let alone accomplish anything.
 
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