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Thread: Rch4

  1. #81
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    With all due respect Ellie I never made any 'claims' here to say I do know what its like to be living with this illness.

    What I said was: "OR maybe this drug is the real deal stopping and/or slowing down progression ? I think before I injected medication into my body as a form of therapy I would want to know what is in it, and is it safe ?"

    I also didn't tell people here not to try, I told Charles if he does just to be careful, that's a huge difference.

    I also don't appreciate you criticism of me Ellie. I have every right to state my opinion here as you do, and if I want to research this drug and share the knowledge I what I found I will do so. So don't tell me what I can or cannot do, and please don't tell me what kind of answers I will get, if I want to seek them out I will do so..if its a dead end so be, its my time wasted not yours.

    If you don't like what I have to say 'block me', that way I don't have to listen to your constant negativity towards me.

    CC
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  2. #82
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    Ellie CC is giving the forum very good feedback. We all post stuff that not all people are not that interested in, but as Norman the soup eating fire dragon says, pick out the nuggets and discard the rest. I hate it when people attack each other on here, because like emails, you cannot quickly correct your response as in a face to face conversation. Dude xx

  3. #83
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    Hi,

    Just updating. My wife who is on RCH4 is still well and still shows no signs of progression (Since Feb 2016!)
    Chart below shows the time lines of my wife's identical triplet sisters and mother who have already died from this terrible disease.
    My wife has not regained any muscle groups that she lost originally but her mobility has increased and hence her ALSFR-S score has actually gone back up.

    To all those worried about safety, yes we were worried as well, but in the big picture, we had watched 3 close relatives die and wanted to try anything that was promising out there. We could not find anyone who reported adverse reaction to RCH4 when looking. When my wife started it, she started on a super low dose to check for adverse reactions and then the dosage was slowly raised.

    After several months, even the twitches and cramps completely stopped.

    I can say we have not paid a penny for the drug and have always been treated with professionalism and compassion by the 'RC Group' and so the 'scam' headlines are just ridiculous

    The way the drug has been discovered and how it has got to where it is is not conventional because it is not big players that have discovered it and they don't like that. That is why some of these players are making it hard for RCH4 to succeed. After knowing intimate knowledge about RCH4 and its supply and dealing directly with some of these 'experts' it really saddens me how a lot of them are just in the game to protect their incomes. The industry is certainly very corrupt!

    March 18.png

  4. #84
    Forum Member Terry's Avatar
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    Hi Mndmarion;

    Thanks for the update and I hope your wife stays the same or improves a bit. I hope that others report similar soon.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  5. #85
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    Marlon:

    Great for your wife. This is a truly remarkable response over 3 years.
    As I have said elsewhere on the forum I am not a 'doubting Thomas'.

    Can I please ask you to reply to the following questions. And please do not be offended:
    1. Did your wife have a definitive diagnosis of ALS?
    2. When was she diagnosed?
    What were her symptoms at diagnosis?
    Where was she diagnosed?
    Who diagnosed her?
    Again please do not be offended by these questions. I am trying to make sense of this all.
    I do hope you reply.

    Best Regards

    Charles

  6. #86
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    For those interested, I found this discussion on ALS forums regarding RCH4, they seemed just as confused over it all over there as well. Some claim its a scam others say they are taking it and it is effective.

    I copied some of the text, but not the names of users, being its a public domain I'm 'assuming' it is all public info.

    There are a few people discussing this drug but if you want to see all of the thread its on ALS forums on the thread titled 'RCH4 Drug stopped by Dr. Bedlack'

    CC

    ************************


    RCH4 Drug stopped by Dr. Bedlack
    ________________________________________


    dr bedlack designated eric valor as the lead investigator for the rch4 review on behalf of alsuntangled (alsu). a review for alsu should be conducted in the following manner, according to the alsu website (2 minutes into the 7 minute animation it states how reviews are conducted):

    ALSUntangled.com - How To Participate137

    the rch4 review was not even remotely conducted in this manner. the lead investigator posted a blog calling rch4 a scam and then contacted users of the drug. due to the way the alsu review was conducted, the voluntary funding sources for rch4 immediately stopped. the funding was not stopped due to 'lil ole eric' but because the lead investigator of alsuntangled, a respected organization in the als community, called rch4 a scam.

    dr bedlack was given confidential files showing years of data by the rc group.

    the definition of scam is a dishonest way to make money by deceiving people. the rc group never charged pals for rch4 and never made any claims to the pals who took it that rch4 would stop, reverse, or cure als.

    dr bedlack needs to disassociate alsu from eric valor and make a statement that rch4 is not a scam.

    ********************

    Mich, first a moderator comment: this post belongs in Rants since it is entirely opinion rather than fact but in the interests of continuity from the original thread and Eric's responses in Research News, we'll leave it here.

    Secondly, a regular-person comment -- Eric has admitted his conflict of interest as well as the fact that "lead investigator" was used grandiosely instead of "volunteer support," so I think we've done that part in the last thread. The more serious issue, I think, would be -- did ALSU's attempt to "investigate" RCH4 result in any facts worth grabbing on to? Sadly, no. And the bit about having to close up shop due to Eric's posts is just wonky.

    First, if the funders believed, they believed. Blog posts (not to mention scholarly publications) critiquing development programs by implication are as easy to find as dust, so if every program that got zinged closed up, we'd have no therapies. Second, if a neuro freaked out and withdrew "consent" for his patient to be in the RCH4 "trial," most patients know how to use a phone book, metaphorically, write a check and find a neuro willing to sign a form. And honestly, it'd be a poor neuro who wouldn't find in 5 seconds w/ Google that Eric is a PALS and not a professional scientist.

    I will say, calling on Dr. Bedlack to do anything at this point seems rather silly, but in particular, he can't disown Eric because Eric continues to work with ALSU, and likewise Dr. Bedlack can't "state" anything isn't a scam that he hasn't investigated from a scientific perspective, nor does that brand of analysis entail guesses as to motives and honesty, and the secrecy factor seems to have rather prevented a full scientific assessment since I haven't seen one.

    But if the page you linked to is correct and "confidential" data were disclosed, would it not be in the dosed patients' interests to ask that they be released so as to call off the hunters, and the therapy program re-instituted? And if the named entity in the NDA is no longer operational, that may be an out-clause anyway.

    So, Mich, if you want to benefit the cause and really think there is something to RCH4, persuading its sponsors to come back out of the closet and collaborate with the witch hunt (hard to maintain in the face of full transparency these days) seems like the most constructive course of action. Either way, we're not gIf ALSU has usable data, they should comment/report it, I agree, Brad, or explain why they choose not to at this time. The paucity of gold-standard evidence notwithstanding, I don't think ALSU members always understand how scientific information and other stimuli become decision support in the real world. And Eric overstepped, no doubt.

    *********
    At present, RCH4 is listed as an "open review" on the ALSU Web site, and you can vote for it or other tI feel compelled to jump in here. First I pointed out to Dr. Bedlack some months ago that the untangled site was flawed, a person could vote an infinite amount of times in one sitting - helped him fix it. I have been taking RCH4 for 9 months, free. My ALSFRS score has virtually stabilized and can be verified by a Mayo Dr. whom I copied in a letter to Bedlack.No reply from Bedlack. The people that have supplied me chose not to participate in an untangled verification, for reasons that are not our business. it is their choice, they lost funding because Eric went above and beyond just posting.He went on a witch hunt, trying to find names and addresses of people who were involved, actually causing damage to the charitable funding of the project. This is not a scam, it's a shame - that a few people that cannot beleive that there are people that would invest their life savings to help us are immediately called con artists. Bedlack with the info he has knows it's not a scam and should say that at least. opics to be pushed up on the list. oing to re-litigate what we did in April
    ***********

    Glad to hear that you feel your progression was delayed. Do you have evidence to the effect that Eric actually contacted funders?

    For the record, the RCH funders/management were extremely na´ve if they thought they could stay (back?) under the radar forever while dosing PALS. I am not ascribing evil motives to them as I don't know them. But their Web page on the topic is of the unprofessional paranoid tone (Genervon, anyone?) that is unfortunately common in the rare disease world. And don't tell me you're only paranoid and light on facts if no one's out to get you. The site goes beyond that.
    I agree with Ken. I cannot understand the moderator's stance on this. She is giving her own biased opinions. Fact RCH4 works. Fact RCH4 is not a scam. Fact Doctor Bedlack has proof, and knows for sure that RCH4 is not a scam but refuses to speak out.

    *********************
    What I do not get is why anyone who knows they have an effective treatment for ALS, would not come forward with it ? I know I would pay for any drug that would stop Steve's progression. Where is the proof that it works? Jenny, what supposed proof does Dr. Bedlack have? If there is a cure why isn't someone screaming from the rooftops. I know I would scream until everyone who needed it... knew.

    Why not put it our there so all PALS can get it? You should not be able to just pick and choose. Jenny, are you taking the drug or just commenting with no proof of your own?

    I do not understand why anyone would pick and choose who gets a drug that is supposed to halt this messed up disease. It is works and they come out of the closet I am sure there would be funding to get our PALS the meds. I also agree that the trial process and paperwork is really screwed up. I do think if a drug has promise that it should not be set on waiting approval.

    I can tell you that Steve does not have time to wait on trials and is getting weaker everyday. We would try anything that shows promise.
    I bet if any of their loved ones has this disease they would want the opportunity to make a choice. I am beyond frustrated with the lack of support for some of the drugs that are out there. The latest one is sitting waiting on signatures. It has been made very clear that this drug would need to be started before FVC decline. Well there goes s chance to help Steve and so many others.

    We do not have the time to sit here and wait for every stupid step in the process.
    Last edited by ccinjersey; 12th March 2018 at 22:56.
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  7. #87
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    I'm going to contact ALS Worldwide, and inquire with them about this medication to see if they have any information or knowledge to share about it that may help to shed more light on this drug.

    If I get a response from them will share it with forum.

    CCxox
    .

  8. #88
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    As I stated above I reached out in a email to ALS Worldwide, and below it the response back I received from them.

    CCxox

    ****************

    Stephen Byer <stephenbyer@alsworldwide.org>
    10:28 PM (1 hour ago)

    Hi Cxxxxxx,

    RCH-4 is the coded name for edaravone (generic name) or Radicava/Radicut (brand names in different countries). We introduced its usage in the US about 2.5 years ago and it has been a Godsend for many. It is the most important drug for ALS/MND systemic benefit since Riluzole and far surpasses Riluzole in its performance. I can’t tell you how many times I have pondered/wished/imagined how different our family’s lives would be if our son Ben had access to edaravone prior to his death 10 years ago.

    Yes, we provide edaravone to many people around the world. That has nothing to do with my heartfelt endorsement of it, and in truth, it is irrelevant to ALS Worldwide from whom you or others obtain it.

    If you wish to discuss this or anything else that may be of benefit or simply interest to you, I will be a passenger in a car for two hours tomorrow morning, with nothing to do because Barbara no longer lets me drive. You can reach me between 9am and 11 am central time on my cell phone, number below.

    Kind regards, Steve

    Stephen Byer
    stephenbyer@alsworldwide.org
    ALS Worldwide
    5808 Dawley Drive
    Fitchburg, WI 53711-7209
    608-663-0920 Office
    608-698-4200 Cell
    608-237-2274 Fax
    Stephen.Byer2 Skype


    To learn more, please visit us online at www.alsworldwide.org and on Facebook and Twitter.

    ALS Worldwide is a nonprofit organization that strives to help people with ALS live better and longer

    by providing free guidance, care and support to patients and their loved ones in more than 150 countries.
    .

  9. #89
    Forum Member nunhead_man's Avatar
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    [QUOTE=ccinjersey;RCH-4 is the coded name for edaravone (generic name) or Radicava/Radicut (brand names in different countries). [/QUOTE]

    !!!!!!

  10. #90
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    CCxox,

    The reply you have from ALS Worldwide is an absolute crock of crap.
    RCH4 is not Edaravone

    RCH4 is a Peptide drug and nothing like Edaravone/Radicava and is not available from anyone else but the RC Charity, where we get ours from.

    Charles - Answers to your questions:

    Can I please ask you to reply to the following questions. And please do not be offended:
    1. Did your wife have a definitive diagnosis of ALS? She has been diagnosed by 2 separate Neurologists in Australia and one of them is the leader in ALS in Australia. She had also been Gene tested and proven to be positive for the Lie114Thr variant of the SOD1 Gene
    2. When was she diagnosed? Her first diagnosis was in Feb 2016. We knew before diagnosis because my wife had already cared for her mother and sisters to death with the same familiar disease. Once symptoms started, we knew what was going on.
    What were her symptoms at diagnosis? Loss of strength and could not lift her legs off the floor when sat down. We also realised that she had been using her arms to pull herself up stairs for a couple of months previous.

    Where was she diagnosed? Gold Coast and Brisbane, Australia
    Who diagnosed her? I don't have permission to divulge identity of our Neuro. He knows she is on RCH4 but does not support and so don't want to name.

    Hope that helps
    Last edited by mndmarlon; 13th March 2018 at 09:02.

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