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    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.

    Comment


      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

      Comment


        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

        Comment


          Thanks Jenny much appreciated xxx Jerry

          Comment


            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

            Comment


              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.

              Comment


                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.

                Comment


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

                  Comment


                    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.

                    Comment


                      Well said Kayleigh. You echo my views on this subject.

                      Barry x
                      I’m going to do this even if it kills me!

                      Comment


                        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

                        Comment


                          HI Sportingmac, you are right that they can give MND/ALS to mice - but they cannot cure them.

                          Comment


                            Originally posted by alfadoc View Post
                            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.
                            You are spot on and thanks for this.

                            Have been using RCH4 from the research charity at no cost for over a year no. Zero side effects and my progression has been documented to have slowed by over 70% compared to rate of progression the years prior.

                            What is reassuring to me that RCH4 is legit and works is the research charity does not discriminate based on progression like many trials do to achieve a better efficacy number.

                            Comment


                              alfadoc, as Tim said, you are spot on with your evaluation.

                              Pity that 'leaders' in ALS research, who have negatively commenting on the drug, cannot realise this fact and understand the damage they do to the charity with their negative opinions while the charity is seeking funding.

                              Just because this drug has come to play via an alternative route (i.e. not by a large investment company), it does not mean it needs ruling out but it does not conform to convention in the way of it coming to the market. In fact I think that the way RCH4 is coming to the market is much more reliable. I am very skeptical of the major drug companies pushing drugs through trials with very suspect skewed results. After dealing with RCH4 over the last three years, my eyes have been opened very wide with the amount of corruption and people self protecting their own employment over doing the right thing.

                              The charity does not have loads of money and what they had available to them, was not enough to put RCH4 through Phase II trials, so instead they have used their money to supply a small group with RCH4 to get results and then move on to hopefully get investment from someone, or company, who has the money to put through FDA trials, get drug to the masses and then potentially make then a lot of money.

                              I am very grateful to the charity for what they have done for my wife. Her ALSFR-S score is still 45 after 3 years on RCH4. Her identical triplet sisters and mother all died within 18 months of first symptoms. 3 years of no progression is too long to be a slow progress timeline and her geneticist said because she was medically identical to her sisters, she would probably follow the same timescale.

                              The charity has never charged us a penny and has always supplied very supportive information and help as well. If you have only just come into this awful ALS space, it is worth reading their website even if they cannot supply anymore RCH4 to new users. I would say it is the most informative website on ALS on the net for good information.

                              My wife's story is on our website (this website is run by the PAL's on RCH4, not the charity supplying)

                              https://rch4als.com/

                              Here is my wife's latest ALSFR-S chart with comparisons with her deceased sisters and mother.

                              Ness May 19.png

                              Hereford Times.jpg

                              Comment


                                I’ve added mums charts below, she’s been on RCH4 since January 2018. She does not take any other drug of any sort.

                                Dr. Bedlack`s ALS Untangled organisation has manipulated the voting system putting RCH4 as of less significance than "Placebo therapy" !!!! and same significance as donkey milk, wood preservative and strobe lights.

                                My family, mum and I are extremely grateful to the charity for all the ongoing help and support they provide.1111.png
                                Last edited by noow17; 19 May 2019, 07:38.

                                Comment

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