Old 02-07-2018, 01:15 PM #1 (permalink)
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Default Boondoggle

Is Radicava turning out to be one of the biggest FDA Boondoggles ever? I am being hammered with phone calls and emails to sign up for this drug. My doctor believes there is not enough information yet. It seems strange to me the approval and distribution of this drug is based on an Asian study of as little as 60 people and ˝ got the real drug. Seems like someone should interview those Asian’s in the study that took the drug ….what kind of success are those patients realizing today? Why is this not important?
I have not heard or read of one USA patient that has had any significant improvement. Everyone is looking for that improved patient……..Where are they? That would be some real ALS News.
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Old 02-07-2018, 03:43 PM #2 (permalink)
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Default Re: Boondoggle

I agree that more study is needed, but just to get things right...the latest trial had 69 patients on Radicava versus 68 on placebo:

https://www.ncbi.nlm.nih.gov/pubmed/...?dopt=Abstract

Also, they did an open-label study after the initial 6 month trial that extended observations to 48 weeks:

https://www.prnewswire.com/news-rele...=eml_cleartime
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Old 02-07-2018, 08:12 PM #3 (permalink)
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Default Re: Boondoggle

I agree that it would be best to base clinical decisions on much larger studies.

I don’t think you’re going to see people having sustained improvement that can be attributed to Radicava. At best, the hope is for it to slow the rate of decline. Since decline in ALS is non-linear, it is hard for individuals to assess how well the drug is working. People take it because it’s the only approved drug that may slow decline other than Riluzole.

Anyway, for more individual opinions, please see the thread on experience with Radicava in the general section of this forum.
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Old 02-08-2018, 08:46 AM #4 (permalink)
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Default Re: Boondoggle

I'm doing Radicava. I'm about to start cycle 4 next week (ie 4 months of being on it). I'm not convinced it's doing anything. I'm also not convinced Riluzole is doing anything for me. Like Karen said, I take both because the possibility, however slim, that it is slowing my disease progression makes it worth a try, at least for now. Barring any bad side effects that would outweigh possible benefit, it's worth a shot right?
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Old 02-10-2018, 10:06 AM #5 (permalink)
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Default Re: Boondoggle

Radicava is not a drug that causes improvements nor does it state it does. We met the doctor who made the discovery of the Radicava benefits when we were in Japan for the initial start of the medicine. The doctor stated that meds were only for slowing of progression. It's now been 3.5 months and my husband has (or had before taking his current clinical trial), more energy then he has had in the last year and a half. All he used to do is sleep but that totally changed when he started on Radicava/Edaravone.

My husband's thoughts on the matter is if it can slow progression, why not? Why shrug it off if it can potentially have these beficial effects? I'm not sure if it's the Radicava, the clinical trial that my husband is back on or the combination of both, but my husband has had zero progression since last September. We're pretty happy about that.
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Old 02-12-2018, 09:51 AM #6 (permalink)
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Default Re: Boondoggle

I am in agreement with everyone here. We need a BIG study. And yes, trying to determine if a population of people with a collection of similar diseases all called ALS can benefit from a drug that only slows progression so you cannot conclusively see results is like pinning jello to the wall.

Bestfriendtilltheend that is great news!
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