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    #16
    Thanks Ellie. Agreed. Cloak and dagger indeed. Makes Zorro look transparent.

    I am in showroom condition. Just wont mention what kind of showroom. Thanks for asking.

    Charles

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      #17
      To those who are interested

      I completed the contact form on the Rch4 website last night and received a reply today together with a further application to complete. They are very frank in their reply that it does not work for everyone and its success rate is based on an analysis of the monthly data they receive from its users. They do not ask for any money at all and describe themselves as aCharity but with little funds theyand cannot help everyone so are selective as to whom they offer help.They do required your own doctor or Consultant to agree to the use of the drug.
      If accepted the drug is sent in bulk and stored in the home freezer and is self-administered twice a week in the same way that diabetics inject themselves.

      I intend discussing the matter fully with my Consultant next month before making any decision.

      Hope this information makes things a little clearer for those who are interested. There are also a number of videos on You Tube which explain, what is in effect, a Drug Trial for Rch4.

      Ann

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        #18
        Thanks Ann.

        Keep us posted.

        Ellie x.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functioning limbs - No speech - Feeding tube - Overnight NIV.

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          #19
          My Consultant did not know much about Rch4 but advised me against agreeing to try a drug from overseas where the contents are unknown and has had no properly conducted trials, It sounded too good to be true so probably is.

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            #20
            Annb,
            My consultant had not heard of RCH4 and many still have not. I find it strange that leading Neuros don't check places like the forums in case people are having reversals or stumble across things that help.
            With my wife having Familiar ALS we new already what was coming after she had already lost 2 sisters and her mother to the disease, so we thought there was nothing to loose, as we could find no other treatment that could work (loads of claims of different drugs with high price tags).
            We are in Australia and so in another country from supply, so were also very nervous.
            The supplier was very informative and dosage rates were very low to test for reactions before the dose ramped up.
            My wife had no side affects at all!
            All we had was positive results and my wife is still alive at an ALSFR-S score of 43 after 2 years. All her relatives died within 18 months from aggressive SOD1 ALS. My wife is also an identical triplet and the geneticist warned my wife that she would most probably follow the same timeline.
            If you need any info let me know
            Thanks
            Marlon

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              #21
              Annb,
              There are a few patients posting results on the PLM website:
              https://www.patientslikeme.com/treat...28469#overview
              Marlon

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                #22
                Hello mnd marlon
                I think neurologists think people that use the Internet are hypochondriacs and any information they have taken from there is worthless
                Last edited by Streetwise; 20 October 2017, 13:01. Reason: Memory

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                  #23
                  Streetwise, yes I agree. Our Neuro has not really taken any notice until lately. because my wifes progress has still been halted for so long. But that has taken nearly 2 years. He says that just about every patient that comes through his door is trying something and that is why they take little notice.

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                    #24
                    Hi Marlon,
                    what an uplift to read your wife's positive response to RCH4.
                    It would appear that due to the lack of backing from pharmaceutical companies this drug cannot get to the first post of clinical trials!!
                    I was diagnosed with MND 5 weeks ago. This followed 16 months of testing for Laryngeal spasms to indigestion! My husband and I seem to have researched and exhausted every avenue.
                    Thank you for your link to the RCH4 site, I have completed the form and await their reply. I will keep the forum updated.
                    May I ask is your wife taking Riluzole as well?

                    best wishes Denise

                    Comment


                      #25
                      In light of recent conversations on the forum regarding experimental or non-approved drugs, we wanted to take this opportunity to confirm our stance on unproven treatments.

                      In the absence of a conventional treatment that can cure MND or stop it from progressing, it is understandable that people living with MND may wish to explore other options. A treatment needs to be licensed and approved before it can be prescribed or recommended for use to treat an illness or condition. In the UK the Medicines and Healthcare Products Regulatory Agency (MHRA) licenses treatments. In Europe this happens via the European Medicines Agency (EMA).

                      Unproven treatments have not undergone rigorous testing for their safety and effectiveness. They are also often not supported by any reliable evidence. Those offering unproven treatments often refer to anecdotal evidence and personal testimonies to support their claims that a treatment works, while clinical trials provide a reliable and controlled measure of the treatment’s safety, side effects and effectiveness. You can find more information on current ongoing clinical trials here.

                      The only drug licenced in the UK is riluzole. This treatment has been rigorously tested and there is reliable evidence that it is both safe and beneficial for people with MND.

                      We would encourage anyone with MND who is considering embarking on an unproven treatment to discuss all the implications with their neurologist before making a decision.

                      For further details please see the research into treatment page on our website, which includes details on unproven treatments and clinical trials.
                      Our working hours are Monday to Friday 8:30am until 5pm

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                        #26
                        Hi moderator, what you say is indeed totally correct. However if I stood back and waited for the bureaucratic system to do its glacially slow thing and listened to my neuro I would certainly be dead now. I had no options so had to bang on a number of doctors doors before I found one who had compassion, saw my plight, and agreed to allow me to try rch4. It takes years and a fortune to get a drug approved, meanwhile people lose their lives.

                        You refer to Riluzole it does not slow progression. Its benefit is a 3 months delay to a trach. The new Radicava is now widely available in Europe / UK and it benefits only 7% of patients by slowing their progression by 33%. & costs a fortune. Rch4 is free, has been around for years and supposedly slows progression by 60%. It has stopped my progression and no side effects. The charity say it will not work for everyone and they say they make no claims. A message to all, nothing ventured nothing gained (or lost in the case of a PALS). Thats my pennyworth anyway. Don

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                          #27
                          Hi Don,

                          I think you will find that radicava/edavarone has not received approval in Europe including the UK.

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

                          Comment


                            #28
                            Hello Barry
                            Despite not having approval I have found there are various ways in the UK of obtaining edavarone. It can be brought in from Europe but is only for those who can afford it. It would be interesting to know how many MND suffered in the UK are using it. My own Consultant does not think I should try any drug that did not have approval because of the risks of contamination and unknown side-effects. However, it is tempting when you are deteriorating and there is nothing to help.
                            I would take Don more seriously if he gave more information on his profile.

                            Comment


                              #29
                              Originally posted by Annb View Post
                              Hello Barry
                              Despite not having approval I have found there are various ways in the UK of obtaining edavarone. It can be brought in from Europe but is only for those who can afford it. It would be interesting to know how many MND suffered in the UK are using it. My own Consultant does not think I should try any drug that did not have approval because of the risks of contamination and unknown side-effects. However, it is tempting when you are deteriorating and there is nothing to help.
                              I would take Don more seriously if he gave more information on his profile.
                              https://thesocialmedwork.com/shop/ra...aravone#!Price

                              https://thesocialmedwork.com/shop/ed...izer-edaravone

                              Comment


                                #30
                                Steve 001
                                Thank you for the links. However, the drug cost of 1,500 Euros a month does not include the cost of a professional administering the Edaravone infusions which would need to be done privately. The total cost is out of reach for most MND sufferers like me.
                                Annb

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