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  • Posted by Diana Belland on May 23, 2019 at 11:35 am

    I visit the site PatientsLikeMe frequently and came across a discussion of RCH4.  https://rch4als.com/

    Some patients claimed that it had slowed their progression dramatically.   Can anyone supply any information on RCH4 and are any Forum members taking it?

    Thank you!

    Deleted User replied 2 years, 11 months ago 16 Members · 94 Replies
  • 94 Replies
  • Dagmar

    Member
    May 23, 2019 at 2:34 pm

    I’ll have to read more about it. So far, all I know is that it is an off-label/not-yet-approved drug that is injected directly into the muscle. hmmm…will add more later after a little research.

    Seems that there is a lot of controversy about the drug; and no published research – – only self reported results or company provided research. Since the makers do not state the exact mechanism of the drug (how it works in the body), it’s hard to tell what the efficacy is.

  • Jean-Pierre Le Rouzic

    Member
    May 24, 2019 at 9:32 am

    There are several (many?) people that tell on Internet that RCH-4 slowed the progression for them, but this kind of statement does not mean much. How to be sure if their ALS would have progress quicker without RC4? We have no good way to measure ALS progression and too often the ALS diagnostic is a catch all “you have some disease involving motor neurons“.

    Apart the RCH-4 controversy, there is an incredibly high number of drugs that were patented to mitigate some aspect of ALS. Many are legal traps.

    Filling a patent is not something companies do lightly, as it costs a lot of money. Usually they fill a patent after human trials because at that time they know it is a safe bet. Some patents are dropped afterward because the company did not pay the annual patent fee, often because the inventor left the company and nobody wanted to take care of her/his work load, or the company was bought by a competitor with different goals, etc. RCH4 might possibly be one of such case.

    Some ALS patents are fascinating such as this one about regrowing neurons in the CNS:

    There was a scientific article in 2014 that was heavily cited, but the patent was filled only four years later, so probably they have some confidence in their findings.

     

  • Dagmar

    Member
    May 24, 2019 at 11:37 am

    Thank you Jean-Pierre! Your comment is very helpful towards understanding this complicated process.

  • WeirdTim

    Member
    June 4, 2019 at 11:16 am

    Started on RCH4 in April of last year after being diagnosed in April of 2017.  Like many of you, I read about it for months and then contacted many who were using it via private message on forums. Then, I went to http://www.als-new-drug.com and applied for it.  My neurologist approved me to use it after I provided information from the RCH4 Research Charity.

    I have never been charged a penny for it. I do a injection twice a week into a muscle. My progression has decreased by almost 80% in the last year compared to the year prior. No side effects.

    The RCH4 Research Charity chose to take a different approach in trying to get the drug to market. Instead of waiting for years to collect clinical efficacy and safety data, they instead have the drug away to tho s of us who requested it with a confirmed ALS diagnosis.  This has allowed them to receive a good amount of data in a very short time period.  The drug is ready to see a Phase II/III trials.  The drug is patented.

    There is a non disclosure agreement we RCH4 Patients signed so we cannot disclose some information. This is for a few reasons, none of which are malicious. One of the big reasons the exact MOA or exact chemical composition is not provided is to not encourage counterfeit versions.  In fact ALS Worldwide a few years ago tried to sell counterfeit RCH4 but was served with cease and desist orders by the RCH4 Research Charity.

    The RCH4 Research Charity has been nothing but professional, compassionate and shared openly a wealth of information.  We need to embrace this treatment as I know several whose progression has ceased for several years now.

  • WeirdTim

    Member
    June 7, 2019 at 7:37 pm

    This helps explain how legitimate the self reporting protocol those of us using RCH4 truly is.

    https://rch4als.com/self-reporting-accuracy

     

  • Tomasz Boski

    Member
    June 10, 2019 at 10:54 am

    As AlS is a poorly defined group of diseases the efficacy of RCH4 varies from nil to stopping totally the progression . It is verified by comparing the extrapolated pre-treatment trend  with the progression trend after the treatment initiation. In my case the deceleration is about 60-50%.

  • Marlon + Ness

    Member
    June 10, 2019 at 11:18 am

    Hi there,

    My wife has been on RCH4 since Feb 2016 and we believe that it has halted her progression. I see there is a bit of interest on the forum here so if you have any questions let me know. My wife’s story is here if you want to read about it https://rch4als.com/our-stories/f/vanessa%E2%80%99s-story

    The reason we think RCH4 is having an affect is because my wife is one of three medically identical triplets. All diagnosed with familiar SOD1 thr114lr varient. Her two sisters have already died and went within 18 months of first symptoms. Their geneticist proclaimed that Vanessa will follow a similar timeline. Vanessa (Ness) is still walking around and functioning nearly normal (just a bit slower and tires easily) nearly 3.5 years later. If anyone wants to talk to us, send a message or ask away about our experience.

    Marlon

    • Jean-Pierre Le Rouzic

      Member
      June 10, 2019 at 1:53 pm

      Hi Marlon,

      Just nitpicking if you pardon me:

      You tell that Vanessa has SOD1 thr114lr

      On the RCH-4 web site, Vanessa tells she has SOD1 Lie114tr

      If I do not make any mistake, there is no amino acid named tr, there is however trp (tryptophan), there is as well no amino acid named Lie, but there are Ile (Isoleucine) and Leu (Leucine).

      However I would bet that Vanessa has SOD1, isoform P00441 and point mutation Ile114Thr, which means that on the SOD1 gene, in the P00441 isoform, the Isoleucine at position 144 has been replaced by Threonine.

      More information here and here.

      (edit: I just saw that the correct value is on the chart on your other post)

  • Marlon + Ness

    Member
    June 10, 2019 at 11:19 am

    Here is Nessy’s ALFFR-S chart for the last 3 years with her sisters and mothers timelines on as well, which shows a good comparison between her and her sisters.

    [img]https://i.ibb.co/8MvGgZM/Nessy-June-19.png[/img]

  • Marlon + Ness

    Member
    June 10, 2019 at 4:53 pm

    Jean-Piere,

    You are correct, my memory let me done. I just looked up the actual gene test and it is  p.lle114Thr. I’ll try and put the gene test on here, but have not worked out how to attach pictures yet

    Marlon

  • DAVID

    Member
    September 11, 2019 at 7:42 am

    Hello

    Are the components of RCH-4 advertised anywhere ? Does anyone know whether any lab have or has plans to conduct such investigation ?

    Thank you

  • Dagmar

    Member
    September 11, 2019 at 3:47 pm

    Thank you for the link Karl.

    Waaay down on the page I finally found a statement that RCH-4 “targets a defect in the immune system.” So, this answers my question on how does it work/affect ALS.

    Here are a couple more questions for you:

    1. Why did you stop Riluzole? Do the 2 drugs interfere with each other? What were you expecting Riluzole to “do” – – that you didn’t observe? Since Riluzole removes excess glutamate from the brain… how did you ascertain this was not happening?

    2. I’m not a promoter of Riluzole, but wonder why not take medications that help address the varied causes of motor-neuron death? Meds that address: amino acid toxicity, oxidative stress, calcium cytotoxicity, and neuroinflammation. Why not get the best result from a  multi-prong approach.

    3. Lastly, I am concerned that this site makes questionable statements. It recommends “no exercise” for ALS/MND patients. Exercise has been proven to be beneficial – – and does not “cause muscle loss.” Rather, it helps maintain muscle tone, neural movement memory and lymph drainage. It also states that nutritionists do not understand ALS – – rather, those associated with reputable ALS Clinics do.

    We are all looking for relief, answers and… a cure. Best we still do due diligence when considering options and information being offered to us.

  • Tomasz Boski

    Member
    September 16, 2019 at 10:44 am

    Dear Dagmar,

    I have a similar experience as Karl. Riluzole completely useless, without any benefit. It may eliminate all glutamate but if does not stop/decelerate progression it is wasting of money.

  • Dagmar

    Member
    September 16, 2019 at 11:22 am

    Tomasz – – It’s very hard for me to label any generally accepted treatment for ALS as “useless.” You may have a unique sensitivity to know whether you are progressing fast or slow. For most of us, the rate of our progression is difficult to ascertain – – or attribute to one particular therapy or treatment. At this point in time, there is no one treatment that stops/decelerates progression. We pALS have to find what works best for our own body and what we “believe” is working to slow our ALS.

    Research is emerging that there is a combination of factors causing motor neuron death: oxidative stress, glutamate toxicity and immune reactors. So, a combination of medications/treatments seems the best logical approach.

    In addition, to add to the mix of unkowns about ALS, is the recent research showing that having good emotional well-being is linked to slower progression. So…. smiling is still the cheapest and easiest treatment yet! 😉

    https://alsnewstoday.com/2019/09/03/smiling-contentment-happiness/

  • Tomasz Boski

    Member
    September 16, 2019 at 1:37 pm

    Dear Dagmar,

    Maybe riluzole is effective for one of 25 variants of als/mnd. Not my case. If one is trained to carry on quantitative observations then plotting the progresion trend is easy. In my case Riluzole intake did not change the slope of the line.

    I agree that laughing is great therapy. I practice it every day.

  • Steve Mundt

    Member
    September 29, 2019 at 6:42 am

    Hello,

    My mother has been using RCH4 for 3 years now and is doing quite well!! She has had no side effects at all. This charity has been very supportive and we’ve never been charged
    for RCH4. Below I have posted mom’s latest score sheet.

  • Steve Mundt

    Member
    September 29, 2019 at 11:08 am
  • WeirdTim

    Member
    October 10, 2019 at 11:14 am

    From personal experience before and during RCH4, stress of any kind whether physical or emotional or mental are bad for us. A lot of us have trouble maintaining temperature of our body which causes stress. My wife helps me stretch several times a week but nothing to build or maintain muscle.

  • Dagmar

    Member
    October 10, 2019 at 4:37 pm

    WierdTim — yes, emotional and physical stress should be avoided. But I don’t see therapeutic exercise as “stressful.” Done correctly, it helps keep the body’s internal organs healthy, the existing working muscles healthy and contributes to overall emotional well-being.

    I too experienced being sensitive to cooler temperatures during my first 3 years with ALS. But since following a daily program of gentle exercise and regaining muscle tone – – I no longer feel cold.

    So, assisted stretching every 48-72 hours is the only movement your body gets or does?

  • WeirdTim

    Member
    October 14, 2019 at 5:04 pm

    What I’ve done all my life is stretching without trying to maintain or build muscles. I was diagnosed with psoriatic arthritis at age 7.

  • Dagmar

    Member
    October 14, 2019 at 5:13 pm

    That is interesting – – do you still experience the psoriasis? And if I may ask, at what age were you diagnosed with ALS? Do you feel that there is a connection between the two?

  • WeirdTim

    Member
    October 15, 2019 at 1:15 pm

    Still have psoriatic arthritis and I was not by a car with ALS symptoms within one month at 41. I also have another autoimmune disease. It causes pigment loss in my skin.

  • Tomasz Boski

    Member
    October 16, 2019 at 5:45 am

    autoimmune conditions are very common among pals. ALS itself, all indicates, is an autoimmune condition. Myself I have psoriasis, pollen allergy and gluten sensible bowel.

    PHYSICAL EXERCISE  is very beneficial but in excess is very harmful (my own experience). What is an excess varies from person to person and depends on your state.

  • Dagmar

    Member
    October 16, 2019 at 12:28 pm

    On that I can agree with you Tomask: “What is an excess varies from person to person and depends on your state.”

  • Steve Mundt

    Member
    November 17, 2019 at 12:48 pm

    Its been a couple months since I have posted, my mom is still doing very well on RCH4!! No side effects after 3 years now on RCH4, great news. The one thing I don’t understand is why are people still trying to destroy this charity and RCH4, it works well so instead of bashing this group why not help us get this to the market so all of the pals can have access to this drug!!!!!

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