Radicava (edaravone) approved by the FDA in the US

Jer788 Ref RCH4 Did you mention this drug to your consultant. Do we know MDNA view on this drug. Could funding be used to trial it. Just thinking out loud!

Kind regards Daniel

[Jer788]

Hi there, I’ve tried unsuccessfully to contact this company and people like you who use it with no reply other than one lady who reiterated what Ellie said that they have no supply.
Regards Jerry





First off, I took Lunacin for 9 months and did not notice the faintest effect of any kind; $85US per bottle for the stuff went down a rat hole.

But then on the other hand, we have RCH4. I'd like to point out that, while it is not a cure, the experimental drug RCH4 is described by the people who use it as having a "Major" effect on the progression of their ALS. The RCH4 charity's website provides the attached chart which shows the perceived effectiveness of RCH4 as compared to Riluzole and Edaravone.

These percentages were obtained from patient reports on the website "Patients Like Me".

The bulk of RCH4 reports in the "Major efficacy" column should give a good indication as to why RCH4 users (such as myself) advocate the stuff as strongly as we do.

best to all, jim s

PLM.png[/QUOTE]

Hello again to everyone;

First off, I took Lunacin for 9 months and did not notice the faintest effect of any kind; $85US per bottle for the stuff went down a rat hole.

But then on the other hand, we have RCH4. I'd like to point out that, while it is not a cure, the experimental drug RCH4 is described by the people who use it as having a "Major" effect on the progression of their ALS. The RCH4 charity's website provides the attached chart which shows the perceived effectiveness of RCH4 as compared to Riluzole and Edaravone.

These percentages were obtained from patient reports on the website "Patients Like Me".

The bulk of RCH4 reports in the "Major efficacy" column should give a good indication as to why RCH4 users (such as myself) advocate the stuff as strongly as we do.

best to all, jim s

PLM.png

I also wanted to say that it is likely that very few PALS who take a medication elect to publish their information.

Example: Out of thousands who have taken Lunasin only 159 have posted on Patients Like Me.

So it could easily be more successful than the posted reports.

Hi NJM,
I think you can contact the providers at their web site www.als-new-drug.com
Steve

[njm]

Elljie:
Thanks. I will do so.

best

Charles

[Ellie]

Charles, just Google "RCH4 ALS" to find all relevant info on it.

The company, RC Group, does not guarantee a continuous supply of its drug. It is made in batches; currently they have none.

Ellie.

[njm]

Hi Ellie,
If you look on patientslikeme.com there are quite a few people who have reported on the effects of RCH4. It looks pretty effective to me. Most say it has had a major effect, and a few say moderate.

https://www.patientslikeme.com/treatment_evaluations/browse/28469-rch4-side-effects-and-efficacy?brand=false

I have also read on its web site that it has been provided free of charge for years by a charity and is not a study.

http://www.als-new-drug.com

Steve

Steve:
I see it this way:
it may be cheap and it maybe a placebo effect.
The sample sizes are small (11)

Frankly it matters nought to me. I am a sample size of 1. I would give it a go. I will be the judge of any efficacy for me. At worst it will be as ineffective as Aspirin. Let me decide.
Where can I source it?
No harm and nothing to lose in trying.
can you advise where I can access it?

Charles

Hi Ellie,
If you look on patientslikeme.com there are quite a few people who have reported on the effects of RCH4. It looks pretty effective to me. Most say it has had a major effect, and a few say moderate.

https://www.patientslikeme.com/treatment_evaluations/browse/28469-rch4-side-effects-and-efficacy?brand=false

I have also read on its web site that it has been provided free of charge for years by a charity and is not a study.

http://www.als-new-drug.com

Steve

[Ellie]

RCH4 is not Edaravone. I don't why it was posted in this thread.

It is a quite controversial drug, available free of charge. Research it if you've nothing to do!

[njm]

Barry:
Hope springs eternal in the human breast.

Point taken. However I am puzzled by the cost. I read elsewhere that it was very expensive.

Charles

[Barry52]

Hi Charles,

This hardly constitutes a sound study as there were only 11 patients. It may be cheap but so is aspirin.

Best wishes,
Barry

[njm]

A cursory look at this and several things stand out:
1. There are minimal, if at all, side-effects.
2. All report significant benefits.
3. It is very easy to take.
4. It is not expensive (this point confuses me. Is this because it is a subsidized trial?)

Given this info I would be very keen to get onto this. cost would be the prohibitive factor.
It appears that it slows progression down.

Charles

I did a little more research about this. And, I ran across this link. It's on a website called patientslikeme.

Hi Just Me

Who is providing the RCH4 drug for compassion use ?? Has there been studies done on it, and what were the results ?

CCxx

Those are great questions. I would really like to know. That is one of the reasons I posted this here. I'm hoping someone on the forum might have that information.

Michael