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  • noow17
    replied
    Hi Kayleigh, the charity web site says in their first paragraph they have run out of money and also point out somewhere that it is an experimental drug.
    My Mum has been on it for a year without side effects. Here are her numbers
    ALS.png

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  • Barry52
    replied
    Well said Kayleigh. You echo my views on this subject.

    Barry x

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  • Kayleigh
    replied
    We can debate our views on the legitimacy of RCH4 until the cows come home - but until funding can be found for RCH4 to go through all the necessary drugs trials we won't know 'officially', one way or another, how effective it is.

    Personally, I wish everyone well who is currently taking the drug and I wish that more funding was available for further drugs trials. Then we would know one way or another whether RCH4 is ever likey to become a licensed drug for all MND patients.

    From reading the information on the RCH4 charity website, it appears that the charity has removed their contact details because they no longer have the funding to supply new MND patients.

    I have noticed that some people posting on the forum have been getting their hopes up about being able to get the drug - because, perhaps, it is not always made clear on the forum that the charity has run out of funds and so are unable to supply anyone new.

    I am not complaining about people posting their results from taking the drug. However, I feel for those of us who have got our hopes up about the drug, not immediately realising that it is an 'experimental' drug that is no longer available.

    Best wishes
    Kayleigh x
    Last edited by Kayleigh; 12 April 2019, 18:02.

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  • Sportingmac
    replied
    mmmmh - explain this please "Nothing in this web site may be considered to be medical advice."

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  • alfadoc
    replied
    I have read through the 25 pages with interest and people's concerns that this may be a scam. I has looked at their website and the fact that they never ask for money shows it is not a scam. So why you ask the cloak and dagger approach and is this a real charity? The answer is obvious to me as I have seen it all before. The reality is that this group whoever they are, have found what they believe to be a therapy that can help some people with MND. They cannot say that on their website for the simple reason legal action would be taken against them as no human phase 2 trials have ever confirmed RCH4 is effective despite numerous anecdotal reports. The problem is that as we all know everyone is different and rates of progression of the disease varies, so is this just chance that those taking RCH4 are just natural slow progressors.
    I find thus unlikely in new of the fact that many people taking RCH4 are progressing and then the drug appears to slow down the disease.
    This company is providing RCH4 free of charge but understandably they are requesting feedback on how people are doing. The reason is they need to gather as much information as possible. They are trying to get people to invest in their company but in order to do so, you need proof that your product works. By receiving feedback from all those who've received RCH4 for free, they are building up a data base which they can then use to try to convince investors to fund a phase 2 trial.
    It is very difficult for small companies like them to raise this type of investment and everyone wants minimal risk. If they were one of the big pharmaceutical companies, this would have gone through a phase 2 trial by now, for the simple reason that if it actually proved to be ineffective, the big companies are able to write off the costs of the trial as a tax loss. If you are a small company everybody just goes bust.
    I know absolutely nothing about this company but my gut feeling is that they are totally genuine. It is a pity that people have lost faith and funds have dried up because some have called this a scam presumably for their own benefit.
    As for the cloak and dagger, you need to understand that the pharmaceutical world is very cut throat and also are influential. I am guessing that some of those in charge of this company still play a role in either medical or scientific societies and do not wish to be shunned by their colleagues by association with a scam. There are many examples of this happening though the last century, such as the ruination of Dr. Andrew Ivy. Due to his high ethical standards, this man was chosen by the USA government to represent them at the Nuremberg trials but this did not prevent him from being shunned and lose all his positions based on an association with a purported scam which in fact never was.

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  • Sportingmac
    replied
    Originally posted by Lynne K View Post
    Thanks for your info Chas. About the length of time since Rilozone came on the market: this shows that fingers ought to be pulled out to find a more effective treatment urgently. There seems to be some positive steps being taken. Fingers crossed. Lynne
    Wholeheartedly agree regarding timesacles for a 'cure'. Unfortunately that 'gap' is being filled with 'alternative' solutions. "we are all different" in my view is why we have such gap fillers. Question: are we all different? or is it that the rate of progress is different?

    Objective testing beats subjective testing for proper analysis.

    If researchers can 'give a mouse MND/ALS' and then cure it - then sure there is hope. But transalating that cure into the human body is still a big issue.

    Let's hope for a cure soon.

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  • oldnewyorker
    replied
    Hello again to everyone;

    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 Radicava.

    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

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  • Jer788
    replied
    Thanks Jenny much appreciated xxx Jerry

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  • JennyinFrance
    replied
    JER788

    Hi
    I have been on RCH4 for 3 years now. The charity that provides it for free have run out of funds so they have temporarily removed the contact link from their website in order to avoid having to decline requests (which must be difficult letters to
    write) from PALS. Their site needs to be there as it is a source of information and advice for everyone who is taking RCH4. Jenny x

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  • Jer788
    replied
    Hi TIANDB, can you or someone else on this drug please pm me the contact details for this charity. I am progressing quite rapidly and will literally try anything that will help.
    Thanks Jerry



    Originally posted by TIANDB View Post
    I will post here my latest evaluation on PLM, I post not to boast or to crow. I wish everyone could get a chance to try this helping hand.

    Hi All. Still feeling positive. Now today 44 +100. My dosage increased ( 27/9 ) to 0.6ML x 2 weekly as my slipping was still to fast. My legs are very weak and my arms are weak also especially my left one so my progress continues but estimated 50% slower that before which kicks both Riluzole and Radicava into touch on statistics. After now 37 Injections I/M no side effects. Communications and any required advice promptly returned. Can you believe this is free, well believe for it is true. Let us hope someone that with vision and funds will realise what a gem this is. Take care all.. TIANDB

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  • Jer788
    replied
    Hi Marlon, how do you go about getting the drug ? I have drawn a blank on the website maybe due to my location. Would appreciate any help you can give.
    Regards Jerry



    Originally posted by mndmarlon View Post
    Kayleigh,

    You are correct, RCH4 is still a trial drug and needs to go to FDA trials. The 'RC Charity' who supply RCH4 to us, are trying to find sponsorship at the moment, to take it to further trials and eventually get out the the wide MND community. My wife has been on RCH4 since Feb 2016 and has halted her progress, and I know of others with the same results. This drug needs to get to trials asap, as it has no side affects unlike Riluzole and actually offers you longer term results, which is different to all the available MND drugs available at the moment, which may only give short term results.

    Also this thread is for discussion on RCH4 for people enquiring about it and feedback from the users like my wife. There might be better threads targeting good advice for Riluzole and its use / benefits elsewhere on this forum.

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  • Jer788
    replied
    Hi Nick, how do you contact them ? They have shutdown the contact us section on the site.
    Regards Jerry

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  • Lynne K
    replied
    Thanks for your info Chas. About the length of time since Rilozone came on the market: this shows that fingers ought to be pulled out to find a more effective treatment urgently. There seems to be some positive steps being taken. Fingers crossed. Lynne

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  • Sportingmac
    replied
    I go through step phases with my MND. For example - after diagnosis I went 2 years without much reduction in function. Then my right foot went quite quickly. Then another plateau for about 6 months before my left leg started giving signs of weakness. Then another plateau for about 9 months using crutches only. Then my arms went south and stayed roughly the same for 6 month for so. Then everything seemed to go downhill prior to Christmas - left hand is about it really.

    My point: MND is variable rate degradation (the bit that makes us all 'different') so I might assign 'remission' to my variable 'variable' rate.

    Since it is over 23 years now since Riluzole passed its efficacy 'tests' there is a very large gap in the market for hope of a cure.

    Kind regards

    Chas

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  • Kayleigh
    replied
    Thank you Marlon.

    Very best wishes to you and your wife,
    Kayleigh

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