RCH4 Revisited

[Mtzu]

Hello everyone, I have not been here on the forum for quite some time. It may have even been a year or so. I am progressing down the ALS black hole. So, like many others, I am looking for alternatives to deal with this crap. I looked at some of the posts on the forum about RCH4. Unfortunately, there's not a lot of good information. I've been doing some searching the web. This is because I'm thinking about applying to get some for myself. I am wondering if anybody has any new updates on it. I have found a couple of new links on the web. I will share these. I am also interested in additional feedback. Thank you.

A link from the website patientslikeme.

A link from their website with side-by-side comparisons.

Thoughts?

Thanks!

 

[lgelb]

No reputable agent, least of all one for an as-yet-incurable disease, needs to compare itself against another as shown in that page. What happened to the idea of combination therapy? Oh, yeah, we don't know the mechanism of action so we don't know if there would be interactions. But then, what we don't know would fill a book.

The Web site is rife with contradictions (90 vs. 25 pt years of dosing, etc. -- both tiny in terms of proven safety) and the "from time to time we can afford to add new pts" tone is at odds with the defensiveness and secrecy. I'll believe in good intentions until proven otherwise, but I don't even know what the goals of this group are. They admit to having no plans to do trials as required for marketing, yet it would clearly be a prescription rx...

Short answer, no one has admitted to harm; that doesn't mean it hasn't happened. And there is no way to really know anything about efficacy. Caveat patient.

Good to hear from you -- feel free to catch us up on another thread?

Best,
Laurie

 

[bkite]

No experience with this. It is on the ALS Untangled list of of Open Reviews.

 

[Mtzu]

Thank you for letting me know about this. That is good information. I will check it out and follow up on it.

 

[madmarlon]

Hi,

My wife Ness, is still on RCH4 and has halted her ALS progress (18 months and ALSFRS score still on 43).
My wife is the only member of her family left alive as her mother and two triplet sisters have passed away.
No side affects at all
No costs.
Only drama is we are trying to find financial sponsors to bring to full trial now.
A bit hard with the bad press, but we will get there as at the end of the day, the results are speaking for themselves.

Marlon

 

[Mtzu]

Marlon, that is amazing news. Thank you so much for sharing that. I will certainly take that into consideration. That's huge!

 

[KimT]

Marlon,

Are you saying that the people on this substance are still getting it free? I was under the impression that supplies were being cut off because of lack of funding.

I'm thrilled that your wife's progression has halted!

Do you have information about any of the others on it and how they are doing?

 

[madmarlon]

Hi,

We have been getting it for free. Not sure on how much more I can get as the suppliers are looking for immediate sponsors to do another production run to keep the people on it, still on it. Then they are looking for further funding to take to full approval.

I know the Pharmacy chipped in to get the last production run to keep us going, but that was probably the last help we would get without funding.

I know of others, quite a few of them are on Patients like me and fill in their charts.

Thanks
Marlon