Still here thanks to RCH4

[WeirdTim]

Hello Stephanie! Have no idea what it is or who is behind it. Like most, I decided to apply to try it based upon private conversations with many current RCH4 patients. In all honesty, being able to process how it works or the molecular structure is above my paygrade and education. It was a little odd at first injecting but those of us in the RCH4 community are very helpful and the Charity that provides it at no cost is nothing short of awesome to communicate with.

Hope that helps.

 

[GregK]

Stefanie, what you ask has been asked here and elsewhere, many times.

The info you find on their website is pretty much all you'll find.

 

[Cherise77]

We asked my Dad’s neurologist at our ALS Clinic today about RCH4 and she had no idea what it was.

It’s strange to us that it’s a very active topic in the ALS forum but yet the neurologist had never heard of it?
Why is that?

Has anyone from Canada or better yet Vancouver received this drug and had success taking it?

Thanks for your time and knowledge.

 

[lgelb]

Cherise, you will not find many neurologists who "know it" as there are no published trials nor even hypothesis-driven papers published for this specific indication. The mechanism relates to the treatment of lymphoma.

Distribution is being handled outside the normal regulated drug realm; no money changes hands, no prescription can be written, so no regulatory approval has been sought, though patients are asked to provide a neurologist's agreement. The scientists behind it use an anonymity cloak though some clues to their identity have been sought and found.

As with many unregulated, under-the-radar treatments, you will find a "cult following" of patients using the compound as you have seen here (bear in mind all of the measurements being used are subjective and subject to placebo effects).

You will also find those of us who feel that ALS is enough of a health risk without injecting unknown, unvalidated [in both the clinical and chemical sense] substances from people who don't sign their work [on grounds that many of us with a scientific background can and do question]. Lest you think that is only a destructive attitude, I hasten to add that we also publish other ways to get the most quality and quantity of life possible here, most of which have good evidence bases and do not entail drugs at all.

Look at the posts here and elsewhere, read the RCH4 Web site, and you will get as much information as is publicly available. You can always contact the team and ask your own questions, should they decide at some point to restore the "Contact" link on their site. Or you can ask one of the PALS here.

Best,
Laurie

 

[WeirdTim]

Hey thanks Laurie for AGAIN trying to discredit those of using RCH4 and having our lives saved because of it. Within four months my breathing dropped 60% down to 40%. In April i started RCH4 My equipment at home reads very very close to what is at my ALS clinic. Yes, my neurologist doesn t know what to think because I have had no measurable progression since RCH4.

So please just stop discrediting and trying to kill us RCH4 users. You've been against this treatment that works!! What is your protocol?

 

[KarenNWendyn]

I’m glad to hear it “works”. But when is this company planning to unveil the secret formula of what this product is and how it works? When, if ever, do they plan to put it through the test of a randomized, placebo-controlled , double-blind study?

If it’s so great, I’d think they’d want to do these things so it could get approved and ultimately become available to all PALS. Then they’d make money off of this and it would be win-win for them and the ALS community.

It’s not that we’re trying to discredit this. We just want more information. I, for one, would be uncomfortable injecting a mystery substance into my body.

 

[azgirl]

oh Tim, such a chip on your shoulder. We are all happy to hear of your progress and I for one would have tried it I was not so far along. But you have to admit the people behind it and their secrecy is strange. That's all Laurie is saying. She even suggested contacting other pals trying it,,

please continue reporting your progress but no need to condemn those who are suspicious of the process.

remember we all want the same end goal.

 

[WeirdTim]

Hello Karen, please read the charities website and you will see it has been submitted to several ALS docs, organizations and ALS meetings. Have you read their website? I encourage it for sure.

 

[WeirdTim]

Azgirl, no chip at all! Unlike most trials and studies, the charity gives RCH4 to anyone with ALL regardless of progression. If you read their website, they explain this.

Laurie also told me I didn't have ALS based upon forum conversations and my posts from me relying what docs told me. Unfortunately she was wrong. When I researching RCH4 I communicated with many RCH4 Patients from all over the world, all with different progression. Also, I read, re-read and read the charities website many times over, something most who criticize RCH4 or the charity so not do. Just because the charity chooses to do things differently than all the failed AND drugs doesnt make them shady, it's just different.

Take care.

 

[KimT]

Cherise,

That response doesn't surprise me. After doing the rule out blood work, Mayo told me to stop taking Vitamin B-12 because my levels were too high. My levels were just above the high range of normal but when I had it tested at spectra cell labs, my level was on the lower end of normal. They do a different type of blood testing. I understand the very small risk involved with isolating one B Vitamin component and taking high doses of it but, in my opinion, the benefit outweighs the risk. I test all my Vitamins/minerals at least once a year to make sure they are balanced.

I would have a different reaction if our "expert" doctors really understood what causes, what cures, and what treatments offer help. They only do what they have been trained to do and that is measure progression, prescribe BiPap, wheelchairs, PT, OT, and all the other things to make our quality of life better. I would say the exception to this is Dr. Bedlack who has studied ALS reversals and delves into some alternate therapies that could help. I understand the purpose of structured clinical trials and totally support them but I have talked with Richard from the Charity and I honestly don't believe RCH4 is a scam or snake oil. I believe it is a protein-blocking peptide and, for some patients, it appears to work. I also believe that the Charity got its money from members of religious congregations who believed in the treatment and wanted to help.

Years ago, if someone told me they could cure c-diff with fecal transplants or cannabis worked ten times better than any sleeping pill, I'd be skeptical. It's good there is a healthy amount of skepticism but when PALS are getting RCH4 at no cost and it's helping, I don't see a scam. If it is a scam, the people giving the money were the people scammed. However, I've not seen one of the benefactors post on boards and, if I were scammed, I would be posting on every forum available.

Differences of opinion, posted in a civil manner, cannot hurt. I'm glad this thread is still active and I look forward to progress reports from our PALS and/or their caregivers on RCH4.

 

[KarenNWendyn]

Hello Tim. I tried to look up the charity’s website. I found www.RCH4.com. I found this statement:

“The drug is made for us to our specification under contract by a major manufacturer of prescription drugs.
As very large amounts of money have now been spent on developing this drug, and treating PALS free of charge, we will not be able to do clinical trials in the foreseeable future.
We have no overheads, no paid staff or offices, and we work from our own homes. All the costs were met by ourselves.”

Let’s say it really is a great product (and I sincerely hope it is), what happens when the charity money runs out? Are people investing in this drug? The statement about not being able to do clinical trials is worrisome. And just who is the “major manufacturer of prescription drugs “? What exactly is this product’s chemical structure and mechanism of action? What are the possible adverse effects?

Submitting information “to ALS docs, organizations, and meetings” is all good, but really doesn’t substitute for an organized study.

 

[lgelb]

Tim, I'm not going to dive into the mud with you but it is an absolute fabrication that I "told you that you did not have ALS."

Best,
Laurie

 

[WeirdTim]

Hello Karen, please see this link: Main
Please read it all, lots of information including to whom they've submitted their papers to and when. After reading it all, I could easily understand the route they chose after being dismissed by so many ALS organizations and professionals. They just want to help us....and I gladly accepted it.

Like I've said before....I cannot judge the charities ways or choices as they are saving my life.

 

[WeirdTim]

No mud Laurie:

https://www.alsforums.com/forum/do-i-have-als-als/38823-april-2017-diagnosed.html

 

[KarenNWendyn]

Addendum: the RCH4 website also shows a graph of progression rates that gives the appearance that there is data comparing RCH4 to Riluzole and to Edaravone (Radicava). This is misleading.

The people making that graph are using historical data for each drug. The drugs were not compared in a head to head study. There is no way to know if populations of PALS in these studies were comparable (I.e. matched for disease duration, age, baseline functional rating, etc.).

I’m looking at this as someone who has participated as an investigator in clinical research trials, and this kind of data would never get published by a reputable medical journal.

They also mention that PALS receiving RCH4 through their charity will get the real product, not placebo. While that is great news for those wanting to try this product, it makes it hard to interpret the results. And since the results they report are based on PALS’ self-assessment of their own functional rating, we are not necessarily getting unbiased reliable data.

People wanting to try RCH4 may not care about all that scientific mumbo jumbo, but I’m putting it out there for those who do.