Old 06-10-2018, 06:32 PM #136 (permalink)
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Default Re: Still here thanks to RCH4

WierdTim, Did you do a full PFT...?
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Old 06-13-2018, 01:32 AM #137 (permalink)
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Default Re: Still here thanks to RCH4

My mother has been on RCH4 now for 20 months, she has been stable with no side effects. Its time to get this drug recognized, this could be what the ALS community has been waiting for!!!
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Old 06-13-2018, 12:26 PM #138 (permalink)
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Default Re: Still here thanks to RCH4

Awesome news!! And I agree with you fully.
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Old 06-13-2018, 01:12 PM #139 (permalink)
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Default Re: Still here thanks to RCH4

I would like to share my experience in favor of rch4.

I first contacted them last September to request the drug. In personal communication they were always very professional and helpful. They asked for a permission slip from my doctor, various lab results, a list of all my meds, and required a monthly monitoring report.

For five months I had no side effects. In month six I started Radicava and due to that, they asked for some new blood tests. Soon after starting Radicava I began to develop an allergic reaction after each shot of rch4 that consisted of a dozen or so "bug bite" like spots on my arms and torso. After reporting the new reaction they advised me to stop taking rch4.

In the six months of taking rch4, my progression never stopped, but looking back at my FRS trend line before and during, progression definitely slowed. If anything, I noticed that my voice was stable for six months, but now it is declining again.
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Old 06-15-2018, 07:56 PM #140 (permalink)
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Default Re: Still here thanks to RCH4

For those of you who have discredited us RCH4 patients taking our own scores and submitting them to the Charity, your beloved Bedlack has his trials patients do the exact same thing.

Don't believe me?

https://www.als.ca/blogs/dr-richard-...scovery-truth/
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Old 06-15-2018, 08:55 PM #141 (permalink)
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Default Re: Still here thanks to RCH4

Tim, I will ask you keep it civil and NOT try to make this into something again. This forum does not welcome folks coming here to restart conflict by insulting medical professionals. This subject is contentious, please do not continue this by deliberately posting something to discredit and insult. This is not a good way to convince people of the efficacy of rch4. All it does is perpetuate conflict.

Note: Please also do not come back at me with "But they started it", etc. We should be past this. Report your good news by all means. Show its efficacy, but stop with the negative stuff about anyone who isn't sold on it. It does rch4 no good to see this narrative being revived every time someone comes here to talk about it.
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Old 06-15-2018, 09:23 PM #142 (permalink)
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Default Re: Still here thanks to RCH4

Interesting, all I posted was a link showing Dr Bedlack gets his information the exact same way as RCH4 patients send their information to the Charity.
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Old 06-15-2018, 09:42 PM #143 (permalink)
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Default Re: Still here thanks to RCH4

WT,
The issue isn't so much the content as the apparent fact that there was no visible need for it.

Or is there a specific, recent post you're refuting?
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Old 06-15-2018, 11:03 PM #144 (permalink)
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Default Re: Still here thanks to RCH4

Shiftkicker, I made that post because of your comment on page 9 of this topic.

You stated:

"Romeo- My understanding is the RCH4 folks can provide all the answers you need with regards to what you need to do in order to qualify. They are quite protective of their procedures and what information they make publicly available, so I'd communicate with them directly about your options.

Best of luck with them- I hope you can get information that helps you out."

Since there was question of their procedures i thought finding an example of how others gather information relating to progression and effectiveness would make it easier to understand.
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Old 06-16-2018, 12:28 AM #145 (permalink)
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Default Re: Still here thanks to RCH4

Sure Tim. I guess the "Your beloved Bedlack" part was definitely not meant as a dig. It really comes across as you wanting to engage in an argument if you think my recommending people contact the providers of rch4 to get information is problematic in some way.

Seriously, folks deserve all the info they can get about any manner of treatments and available drugs. But please spare us a continuation of past conflict about rch4. It does the reputation of rch4 and its providers no good and obscures any potential positive message if people only come to this thread to work out whatever issues they have with Dr Bedlack's lack of response to the makers of rch4 on this forum and carry on arguments started elsewhere.

Trying to create conflict or prove something against Dr Bedlack or his methods in this thread isn't quite the same thing as creating a positive message about rch4 by posting your gains or reporting news about this treatment. I ask you once again to stop.
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Old 06-16-2018, 02:18 AM #146 (permalink)
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Default Re: Still here thanks to RCH4

For the benefit of those who may not make it through this thread, as the RCH4 Web site states, it's a charity, not a clinical trial. There has been no IRB approval of a protocol, and there is no independent Data Monitoring Committee to monitor whether the drug is working as hypothesized, whether patients are at risk, etc.

In short, there is no independent scientific oversight of these experiments, and they will never qualify as evidence to take the compound to market. That's why the Web site says "friends" instead of "patients."

Anyone entering this charitable program should be aware of these facts, which are both acknowledged and muddled on the Web site. The fact that patient-reported outcomes (answers to questions) are part of the program, as Tim mentioned, as in all drug development, does not mitigate the differences between this and a clinical trial, or even authorized Compassionate Use as we have discussed in other threads.

RCH4 patients have no tangible protection from adverse outcomes and are by implication trusting in the good intentions and scientific competence of anonymous principals.

Best,
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Old 06-16-2018, 06:29 AM #147 (permalink)
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Default Re: Still here thanks to RCH4

Shiftkicker, great that my positive intentions have been turned against me. I meant no disrespect and figured by using a example from a Dr that many here know would make it easier to understand.
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Old 06-16-2018, 10:47 AM #148 (permalink)
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Default Re: Still here thanks to RCH4

Enough already!
I'm sure I'm not the only one reading this thread to look for information. The small barbs at one side or the other are getting a little tedious. Report what you can but please leave your personal opinion out. I for one don't need to hear more about Dr. Bedlack, or whatever his name is.
A question for "this guy" did they figure out what it was you were reacting to?

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Old 06-16-2018, 06:02 PM #149 (permalink)
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Default Re: Still here thanks to RCH4

I'm always interested in the success stories from PALS. There's no need to make this thread nasty. We have one common goal and that is to find a cure for ALS. EVERYBODY wants that. Let's refrain from badmouthing anyone.

Some people are typing with their eyes. They don't need to weed through Pi$$ing contests and negativity.

This may be a public forum but it is owned and the owner chose moderators to keep things running smoothly.

Can we please leave Bedlack out of this discussion. It is not productive.

Hoping for continued success for all PALS using RCH4!
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Old 06-16-2018, 06:04 PM #150 (permalink)
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Default Re: Still here thanks to RCH4

All I did was show an example of how Bedlack gathers information from patients in one of his trials. No hate.
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