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    Rch4

    I hope this helps.

    I have been on a drug RCH4 for over 2 years. After 22 months of steady decline, soon after starting on it, it stopped my MND and I know of others as well. Although I am extremely thankful, it has not cured me. It has been given by a charity for years free of charge, to anyone who asked for it who had diagnosis and their doctors agreement.

    There are a lot of reports on the net from users about it. Most say it has a major effect. Information is available at `patients like me` and other MND and ALS forums.

    Trolls on the forums have accused the charity of being a scam. Disgraceful and untrue, while nobody says much about GM604 aimspro edaravone etc. who charge thousands per month - some are drugs with little or no proof of efficacy as far as I know.

    There is a table comparing drugs that do work at www.als-new-drug.com/riluzole-edaravone-rch4

    I fill in a monthly report and send it to the charity who sometimes provide me with my ALS chart.
    ALS-Doblett.jpg

    Don

    #2
    Hi, the chart looks really good and shows slowed progress versus predicted progress. I'll be honest, I haven't heard of RCH4. I'm on Riluzole.
    Hope it continues to go well for you.
    Bern

    Comment


      #3
      Bern,

      There are many independent reports on the forums, example https://www.patientslikeme.com/treat...28469#overview

      You can also see discussion on the ALSA and ALSTDI forums.

      The charity website is www.als-new-drug.com

      Don

      Comment


        #4
        Don,

        The als-new-drug website no longer exists.

        Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          Hi Don,
          I just posted under New Members and am really happy to see this thread. I hope there are a more of us on this forum. RCH4 appears to also cut my rate of decline by about 51% over the past 18 months. There evidently are many variants of ALS so quite likely there will be no single drug that works for everybody but this may be the best thing out there. All of my experiences with the RCH4 folks have been top notch and and very compassionate and I have learned a lot from my interactions with them. I am hoping that that some how this can be funded to go forward and be offered to a lot more of us. They have many years of patient clinical data collected now and think this is a major travesty for us and can't believe they are not totally funded and taken seriously by other researchers and those who control the purse strings of charitable money raised for research.
          BigB

          Comment


            #6
            Ellie,
            The website was down briefly as you said but went back up and indeed does exist: http://als-new-drug.com/
            There are also independent PALS evaluations of Edaravone (which may cost $12,000 per month) and RCH4 which appears more effective and provided for years by a charity free of charge. https://www.patientslikeme.com/treat...28469#overview
            https://www.patientslikeme.com/treat...25456#overview

            BigB

            Comment


              #7
              Nope, the website isn't down, but still showing as Domain Name Expired and inaccessible.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
              Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Hi,

                My wifes ALS activated started to decline rapidly in Xmas 2015 and we applied to get on RCH4 straight away as there was nothing else available that we thought could help (we knew the signs straight away, see below).
                We knew that it was ALS straight away as my wife is one of medically identical triplets and one sisters had already died from this disease, and her other sister was 6 months into the disease and her mum had already died from SOD1 variant as well.
                As you can tell we were desperate to try anything.
                We were thankfully accepted onto RCH4 and my wife started taking it in Feb 2016. She had already declined to an ALSFR-S score of 43 in 2 months!
                Since starting this drug her progression has halted, and not dropped a single point since.
                Her sisters and mother all died within 18 months of first symptoms.
                If my wife followed that timeline, she should have died in April! She is still walking around fine with plenty of strength!
                We have not been charged a single penny for the drug and only have to keep medical records of our results for the supplier.
                This drug is keeping my wife with me and we owe the suppliers massive gratitude.
                If anyone reads the crap that the trolls have spread on the net about RCH4, don't believe, contact me or my wife, I'll happily talk to you about it. We are real people who this drug is saving.
                We are being monitored by our Neuro here in Australia and results are great.
                This drug needs to go to Phase ll Clinical Trial now! and would need about US$2 Million to fund these trials.
                If anyone knows of prospective investors into this drug then please come forward. Everyone with ALS needs to be on RCH4 as soon as possible.
                This drug works and has all the proof, not like other expensive drugs out there doing the rounds at the moment.
                Here is my wifes chart

                [email protected]

                Comment


                  #9
                  To all those following RCH4, an update on my wife.
                  She is still holding at ALSFRS-S score 43 with no progression
                  I've posted her latest chart below.

                  [email protected]

                  Comment


                    #10
                    Marlon:
                    Where do I get R CH4?
                    I am in the UK.
                    It clearly helps some people.
                    I am slow progressing.
                    How do I get it?

                    Charles

                    Comment


                      #11
                      Folks:
                      This RCH4 post thread is frustrating me no end.
                      Marlon reports good results. It sounds promising. I would give it a try for 6 months.
                      But he is in Australia.
                      Is there anyone out there on the forum who is in the UK and had managed to access RCH4?
                      If so please reply.

                      Charles

                      Comment


                        #12
                        I agree Charles. The whole RCH4 scenario is cloak and dagger stuff. The company isn't prepared to put its head above the parapet which, to me, rings alarm bells.

                        Have you filled out the form on their "Contact Us" page?

                        Ellie x. (Hope you're doing well)
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          Hello Don
                          I would be very interested to learn more about RCH4. Where do you live? How did you obtain this drug originally? Please give more details.

                          Many thanks

                          Ann

                          Comment


                            #14
                            Hello Charles
                            I have been researching RCH4 and am getting confused.
                            Have you discovered any more about it? It appears that the Charity offering it has collapsed.
                            I would certainly like to know more about it and would certainly give it a go, as there seems to be nothing else on offer.

                            Ann

                            Comment


                              #15
                              Hello Ellie

                              I completed the form on the "Contact Us" page last night. I will let the Forum know if I receive a reply. I agree RCH4 is a bit of a mystery. It appears that there is a dispute going on and possible legal case in progress.

                              It is frustrating when you hear that someone has found a drug helpful and then there is no more information.

                              I enjoy reading your posts. You obviously have great tenacity!

                              Take care

                              Ann X

                              Comment

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