- This topic has 94 replies, 16 voices, and was last updated 2 months, 3 weeks ago by Anonymous.
May 23, 2019 at 11:35 am #12115
May 23, 2019 at 2:34 pm #12117
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.
May 24, 2019 at 9:32 am #12125
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.
May 24, 2019 at 11:37 am #12136
Thank you Jean-Pierre! Your comment is very helpful towards understanding this complicated process.
June 4, 2019 at 11:16 am #12223
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.
June 7, 2019 at 7:37 pm #12296
June 10, 2019 at 10:54 am #12311
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%.
June 10, 2019 at 11:18 am #12309
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.
June 10, 2019 at 1:53 pm #12314
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.
(edit: I just saw that the correct value is on the chart on your other post)
- This reply was modified 2 years, 4 months ago by Jean-Pierre Le Rouzic. Reason: just saw that the correct value is on the chart
June 10, 2019 at 11:19 am #12310
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.
June 10, 2019 at 4:53 pm #12316
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
September 11, 2019 at 7:42 am #13149DAVIDParticipant
Are the components of RCH-4 advertised anywhere ? Does anyone know whether any lab have or has plans to conduct such investigation ?
September 11, 2019 at 3:47 pm #13160
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.
September 16, 2019 at 10:44 am #13181
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.
September 16, 2019 at 11:22 am #13182
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! 😉
September 16, 2019 at 1:37 pm #13188
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.
September 29, 2019 at 6:42 am #13308
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.
September 29, 2019 at 11:08 am #13309
October 10, 2019 at 11:14 am #13434
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.
October 10, 2019 at 4:37 pm #13448
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?
October 14, 2019 at 5:04 pm #13484
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.
October 14, 2019 at 5:13 pm #13485
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?
October 15, 2019 at 1:15 pm #13496
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.
October 16, 2019 at 5:45 am #13505
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.
October 16, 2019 at 12:28 pm #13511
On that I can agree with you Tomask: “What is an excess varies from person to person and depends on your state.”
November 17, 2019 at 12:48 pm #13795
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!!!!!
November 17, 2019 at 5:20 pm #13796
The ALSUntangled Group evaluated RCH4 and published a paper in the journal of Amyotrophic Lateral Sclerosis and Frontotemporal Dementia, October 10, 2019.
This article provides insight into the question of why RCH4 has not gained FDA approval and is not available on the market.
If you have data showing that RCH4 has worked well to slow your mother’s progression or even restore strength and facility, you might want to consider sharing that data with Dr. Richard Bedlack, Duke ALS Clinic.
November 18, 2019 at 4:34 am #13799
This review/article is methodologically flawed and based on completely insufficient data which Bedlack received from the 3rd party. It reads like more like act of personal vengeance. After labelling rch4 as SCAM , attempted manipulation of public voting in ALSu ranking list, it is another attempt to bury it instead of promoting a fast, fair and scientifically sound trial.
November 18, 2019 at 3:00 pm #13807
November 18, 2019 at 9:45 am #13803
In respectful reply to Steve and Tomasz, it appears to me that the group of neurologists who make up the reviewers of ALSUntangled have set out clear criteria for standard objective evaluation of ALS treatment protocols. In addition, the names of all neurologists belonging to the review group are included at the end of each review. An interested reader can look up any name on the list to find the credentials of that reviewer.
By contrast the RCH4 website does not list the names or location of the developers of the drug: “The RCH4 Research Charity (http://www.als-new-drug.com), is an informal charitable organization of retired doctors and scientists with lifetimes of experience in membrane osmosis and immunity research. ”
I searched for the names of the “retired doctors and scientists” on the web but was unable to find them. The RCH4 site mentions that funding is needed for Phase II and III trials, but does not mention when or where Phase I was conducted, the location of the trial or the results.
The site also claims that negative reviews from ALSUntangled caused the funding for the charity “to collapse.” Why, if there were sufficient, credible data from pALS using RCH4 available to the funders for their review, would they have withdrawn their support? I note, also, that PLM lists 27 patients who have listed RCH4 as highly or moderately effective. Was this data, which appears worthy of close review, analyzed by the “retired doctors and scientists” and made available to the funders of the charity?
I am glad to hear that Tomasz feels that RCH4 has helped him and that Steve feels it has helped his mother. Perhaps you may wish to have your respective neurologists contact Dr. Bedlack with specific data/evidence indicating that RCH4 has been a significant factor in slowing progression.
I wish you continued good results with RCH4.
November 18, 2019 at 4:09 pm #13817
I agree with Diana: why demand Dr. Bedlack to conduct a trial, when the makers of RCH-4 haven’t done any themselves.
Tomasz’s most recent comment does not read like something that comes from a university professor.
November 19, 2019 at 4:36 am #13822
I do not know what is your profession, I know however that through 4 decades of my research career I reviewed and refused tens of papers for flawed methodology. I never saw a scientific paper that discusses other topics (like in review 51 by ALS untangled party) but experimental data, their discussion and conclusions. Several of my manuscripts were refused for the insufficient evidence to support conclusions and it was perfectly a part of the research routine. Please be so kind and don’t remind me what ethical behavior of a academic researcher should be . Thank you for maintaining your impartiality.
Karl – thank you for your friendly remarks.
November 19, 2019 at 9:41 am #13823OwenParticipant
In addition to what’s in the ALSUntangled review, here is what makes me skeptical about RCH4: if you’re developing a treatment for ALS, you’re either doing it to make money, or you’re doing it because you’re passionate about solving ALS (or some combination of the two). In either case, your objective is to get your treatment in the hands of as many doctors as possible so they can prescribe it to their patients. The way you do that is through clinical trials, peer-reviewed journal publications, and ultimately, FDA/regulatory approval. They claim they don’t have the funding to conduct clinical trials-which is plausible-but I find it exceedingly hard to believe that the medical community as a whole would choose not to investigate further if there was even a slim chance RCH4 is effective.
November 19, 2019 at 10:23 am #13826
I sincerely apologize for my remark; it was not made or meant as a critique of you or your profession, but a weak attempt on my part at reigning in the current discussion — to bring the focus back to comments that are of help to our members and/or shares information based on facts.
Let’s agree to disagree on “why” RCH-4 is not receiving support from established ALS organizations.
Let’s all agree to return the discussion to patient experiences with RCH-4.
November 19, 2019 at 9:27 pm #13835AmandaKeymaster
@Owen. I looked at the various websites mentioned in some of the posts, and I agree with your comments. I believe that if there was any real scientific evidence that one of the research companies would be willing to make financial and time investments to further research and trials. I think that the professionals in the medical field, specifically ones focusing on ALS, will continue to seek out effective treatments and help pALS and others steer clear protocols that are not supported by data and research.
- This reply was modified 1 year, 11 months ago by Amanda.
November 20, 2019 at 11:23 am #13845
Also, we as PALS need to realize that what is good for one of us is not good for the other. This applies to exercise, food, supplements and even medication. To judge a fellow PALS for what works from their experiences but doesn’t line up with your own regiment is short sided and not helping any of us.
For me, I eat 2,000 to 4,000 calories daily and do nothing that could be considered exercise. And….since April 2018 when I started RCH4 I’ve maintained weight just great.
We cannot continue to purposely discredit each other. We need to support each other.
It’s not like someone who has no connection to ALS is talking up RCH4, it’s people diagnosed with ALS. This is an important point.
November 20, 2019 at 11:28 am #13844
Please be aware even before I started on RCH4, any exertion I did that could remotely be labeled as exercise caused me progression. Know of several other PALS with the same issue. Now, my neurologist agrees and the only physical activity I do is stretching with my wife’s assistance.
If I were to tell another PALS on what not to do, exercise is one of those things as it is safe to tell PALS to not exert themselves using exercise, it is NOT safe to tell PALS to exercise.
Concerning the ALSU review of RCH4, I feel it was done to remove RCH4 from the vote on ALSU. Proof is the lack of details. After reviewing several other reviews from ALSU, NOT A SINGLE ONE closely resembles the RCH4 as far as lack of details. In fact there are several treatments still allowed to be voted on because ALSU doesnt have details. The RCH4 review was done by ALSU to remove RCH4 from the voting list, very fraudulent and makes us question the accuracy of their other reviews.
Please read the RCH4 rebuttal here:
Moderators I ask you to keep an open mind and listen to those of us using RCH4. Almost every forum has removed us and silenced us for simply providing our personal accounts. In fact we want nothing more than for all PALS to be using RCH4 because we personally know it works as an effective treatment, safely.
November 21, 2019 at 12:05 pm #13867
Since I started the thread on RCH4 in May, 2019, I have followed the comments on my post with great interest.
I would like to emphasize the fact that I have complete respect for the comments of Forum members who have expressed assertions that RCH4 has helped to slow their ALS progression or that of a family member. I do not challenge those assertions because I am not a neurologist with direct experience of the disease progression of these members or their family members. I am an ALS patient who is trying to educate herself about ALS therapies.
I would like to note once again that what is striking to me is the absence of information on the RCH4 website about the developers of RCH4 and the location of the company which develops and distributes it. This appears to be a stark and concerning departure from the standard disclosure practices of pharmaceutical companies, hospitals and universities which engage in drug research and development.
Here is a link to an article listing drugs currently undergoing trials:
A link is provided for all of the drugs listed. One link leads to a research paper and one link seems to be faulty. However, all of the other links lead to professionally formatted websites of each drug’s developer. All of these websites contain links to names and photos of scientists, research leaders and boards of directors.
The same kind of information, including results from trials, should made readily available from the developers of RCH4. The fact that it is not raises grave doubts in my mind about the product’s efficacy and safety for use. I feel that I have found an answer to the question I posted here last May. My conclusion: there is a lack of convincing data to support my personal pursuit of RCH4.
November 24, 2019 at 1:46 pm #13870
Was told yesterday that a PALS using RCH4 was removed from this forum. Is this factual?
December 18, 2019 at 6:17 pm #14053
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December 19, 2019 at 4:32 pm #14065Chuck KroegerParticipant
I appreciate all the information provided on this thread. I was told by physical therapist and neurologist to conserve my energy for things I want to do. suggestion included using wheelchair to go down the hall to the restroom rather than walking. My ALS has progressed to the point that I seldom walk more than 100 steps in a day – maybe as few as 50 some days. I strain to rise up and walk or move to the wheelchair each morning. I am no longer able to lift my laptop because it is too heavy to handle. Seems everyone I read about is so different, it is as if we all have a different disease. I eat well and have gained back 20 of the 55 pounds I lost while going through initial diagnoses. I do stretch some but don’t “exercise” as such. a few years ago I was training for a half marathon. Now I only dream of a slowed progression. Wish there was clear cut info on RCH-4. At this point (one year into ALS), I am certainly ready to try something other than Rilutek which made me sick.
December 26, 2019 at 6:22 pm #14101HenryParticipant
I’m a nutritionist and I know more about ALS than most neurologists. The nutritionist in the clinic, if there is one at all, knows very little about ALS. The advice they are permitted to give is very limited too. Unless there is highly specialized clinic where they develop individual holistic treatment approaches, I would not expect much, but such clinic probably doesn’t exist jet anyway.
Physical exercise can be very dangerous when it causes stress, as well as too little activity.
Medically-trained physical therapists often treat pALS like stroke patients, which is totally wrong.
December 27, 2019 at 1:51 pm #14103
Henry, agree. When I was first diagnosed, I exercised and although it wasnt to the point of real exertion, my progression sped up. Stopped exercising and focused on stretching and progression slowed. Then when I started RCH4 my progression really slowed, almost at a halt now.
December 27, 2019 at 4:35 pm #14105
With all due respect for you being a trained nutritionist, which gives you leeway to comment on nutritional issues — you however are not an expert in physical fitness/therapy. So, I disagree with your broad statements about exercise — especially pertaining to ALS.
Yes, strenuous exercise is stressful to the body (and mind) — however, very few people with ALS can accomplish strenuous exercise. Much less, even accomplish moderate exercise. Newly diagnosed patients could misinterpret your statement as “all exercise is stressful” — which it isn’t.
Nutritionists in ALS Clinics are “trained in” and study ALS. They give good advice; tailoring to each patient’s needs and are willing to look into alternative suggestions. Yes, they vary in personality and approach — but I disagree with the blanket statement that they know very little about ALS.
The same goes for your judgement of physical therapists. Mine do not treat me like a stroke patient. They encourage me to exercise and celebrate my improvements.
December 27, 2019 at 7:04 pm #14106
Dagmar, what is your definition of exercise?
December 28, 2019 at 11:32 am #14112
My definition of exercise is: any physical movement or activity done with the intention of maintaining or improving the body’s health and fitness.
What is your definition?
December 28, 2019 at 12:47 pm #14115
The dictionary states:
activity requiring physical effort, carried out to sustain or improve health and fitness
The issue is, any exertion has caused progression with me and many others. I am fortunate enough to still have some movement of my limbs and my wife helps me stretch to maintain flexibility, not to build strength.
December 30, 2019 at 3:20 am #14118
I think we have a limited vocabulary to describe this new situation so it is difficult to express our thoughts.
In my opinion Dagmar is right to talk about little exercises like learning new tricks to move the body and adapting to the new ALS life. What is probably important is the complexity of the activity and not its energy consumption.
The reason I see is that complex activities like dancing or swimming are actually involving the upper neurons. Lower motor neurons are involved in more basic biological functions involving speed and strength. Muscles use a lot of energy and the energy supply is limited in ALS so it must not be wasted.
If there is a way to preserve upper neurons by activities such as what Dagmar suggests, then it is a sort of breakthrough in ALS. Dagmar IMO you should try to think more about this, how to involve upper motor neurons with complex activities without using much energy and adapted to limited motor capacity, all would benefit.
December 30, 2019 at 3:24 pm #14126
Since this discussion is focusing more on the issues of exercise, and moving away from RCH-4 — I have initiated a new topic in this forum to address exercise: A Deep Dive into the Issues of ‘ALS and Exercise.’
Here is the link to join that discussion: https://alsnewstoday.com/forums/forums/topic/a-deep-dive-into-the-issues-of-als-and-exercise/#post-14125
January 5, 2020 at 11:58 am #14171Sheryl WilliamsParticipant
I was diagnosed 6 months ago and would really like to try RCH4. I asked my doctor and he said he wasn’t comfortable giving his approval. Just curious if anyone else has had this issue and what they did to get around it.
My progression is moving quickly and I am anxious to get going on the RCH4.
January 5, 2020 at 4:25 pm #14172
Sheryl, once I provided the information and patient experiences from Patients Like Me to my nuerologist, she wrote a letter stating her and the hospital aren’t liable and the rest is history.
As far as availability, please read this from the charity and follow the links as they appear. https://www.als-new-drug.com/drug-availability-cost
January 28, 2020 at 10:57 am #14362
It’s been a while since I reported in on this forum but I’m happy to report my wife’s progression is still halted and we have just gone past 4 years on RCH4 which is awesome when my wife’s two triplet sisters and mother all died within 18 months of onset of this disease. Ness is leading a reasonably normal life but has lost some strength and stamina in her legs, but this has not got any worse in the last couple of years. I see a few comments on exercise on here and I just wanted to add our experience. We have found that if you exert too much, it seems that remaining muscles get over exerted and actually progresses your disease further in those muscle groups. We went on a holiday to Sydney a couple of years ago and Ness ended up doing loads of walking. We found that at night she really suffered from cramps and her legs weakened over the next couple of weeks and she never got that strength back. We now manage any exercise very carefully and have had no more progression (obviously this is also helped by RCH4 as well). Since doing this Ness has not had any cramps or twitches. Diet is also very important and we have found as advised by the charity that sends us the RCH4, that the high carbohydrate foods are good for you. Dieting and eating salads does not go good with ALS – you must battle loosing weight. Initially we were asked if Ness is vegetarian as well, because allegedly this also does not sit well with ALS and surviving as well. Now this is just advice from our RCH4 supplier, but we have found by following the advice, my wife is still on the planet so I’m very thankful
June 10, 2020 at 11:38 am #15545
What my wife have noticed over the last 4 years is that if overexcertion in any kind of exercise is done, she will then find that she suffers cramps that night and can notice a degrade in strength in that area over the following few weeks. We have had this happen several times. We have now learnt to take life as easy as possible and it really helps. Ness still gets around and so keeps active but we just avoid over excertion. My wife is not the best eater and so my be linked to her body just not getting the instant energy required when aready depleted muscles need the extra energy to compenate. One thing that seems very common is that most people who activate with ALS are sporty people who train. The charity who supplies us with RCH4 has always said to us is that you rarely find a large person come down with ALS which seems very true (my wife was a runner)
ANyway, I just wanted to update on Nessy’s progression. We are up to 4.5 years on RCH4 and the progression is still halted which is great news for us. We are convinced that the drug is doing a great job for us, especially when compaired to the rest of her family who all passed away with 18 months of on-set. I’ll try and upload her ALSFR-S chart below.
June 21, 2020 at 10:57 am #15635
ALS victims represent 0.3% of the population. Remarkably, 28% of PALS have a history of going to the gym or similar strenuous activity more than once per week. This is pointed out in the RCH4 website, also confirmed on Utube.
June 21, 2020 at 11:05 am #15637
Marlon + Ness – – In regards to your figures that: “about 28% of PALS have a history of going to the gym or similar strenuous activity more than once per week.”
According to the Health and Human Services website, “28-34% of adults ages 65-74 are physically active.”This proves that the percentages are the same for the general population and those who have ALS
July 4, 2020 at 12:49 pm #15755
Hello, just a update on my mother she is doing quite well with no side effects what so ever!! The RCH4 charity has been supportive and extremely caring for my mother. Here is her latest monthly score.
July 26, 2020 at 11:53 am #15948
It has now been 2.5 years since mum commenced using RCH4 , all provided free of charge by The Charity. Her ALSFRS scores have not declined in this time and she continues to remain stable. Much gratitude and thanks to the charity for their ongoing compassion and support.
Her latest chart.
August 16, 2020 at 11:23 am #16131
Just wanted to update on my wife who has MND and has been taking RCH4 for 4.5 years now, which has been going really well for her. For those who don’t know my wifes story, she is the only remaining triplet sister who is still alive. She lost her two sisters and her mother, all to this awful disease. They all died withing 18 months of first symptoms! We searched for any kind of treatment that may have a chance of working, as mainstream was offering nothing, and still offers nothing! We dicounted loads of things we could prove didn’t work and costs loads of money. We then came across RCH4 on their website and seemed to offer something slightly different that we though was worth a chance. We applied in Jan 2016 and started receiving in Feb 2016 at absolutely no cost! The rest is history and my wife is still with me. Her ALSFR-S score has frozen at 43 as can be seen on the chart below. If you have any questions on RCH4, let me know and if I can help answer, I will.
August 30, 2020 at 3:44 pm #16205
Mum continues to do well on RCH4 , her ALSFRS-R score remains unchanged this month. We are very grateful to the Charity group and hope more Pals have access to RCH4.
October 18, 2020 at 8:27 pm #16586
Hello, just a update on my mom, she is doing quite well on RCH4 it has been 4 years now that she has been taking it. I will try to post her monthly score sheet for everyone to see. We have never been asked for money for RCH4!! This drug could help a lot of PALS out there, but for some reason people in this world don’t want RCH4 to go to market. God only knows, but this drug works to slow the progression of this terrible disease. Sorry I am unable to post mom’s score sheet at this time.
November 17, 2020 at 7:41 am #16814
We were given the devastating news that mum had MND 3 years ago today 17/11/17. It is one of those moments that is etched in our family’s memories.
We consider ourselves very fortunate however to have found RCH4 and the charity that provides it. Their ongoing care and support is invaluable, Mum remains stable with no real change in her ALSFRS- score. We are so grateful to she is still here with us.
January 2, 2021 at 2:17 pm #17321
A Happy New year to everyone on ALS News Today. I’m very happy to have my wife around for another year. It has been 5 years since my wife’s first symptoms of this awful disease. We thought the worst once we realized what was going on because her two sisters and mother all died within 18 months of onset of MND. Lucky for us we were accepted as recipients of RCH4 (a trial drug) which we then received at no cost to us. It has proved to be a godsend because since starting the drug, her progress has halted.
Shortly after onset, we were having to move her around in a wheelchair for any distance. Here is a video of her walking today which I would say is pretty good for 5 years on.
Here below is a copy of her ALSFRS-S chart which is produced by the RCH4 suppliers each month. It also shows the disease timelines of her triplet sisters and mother and how short they were 🙁
January 14, 2021 at 12:10 pm #17461
Diana said “The same kind of information, including results from trials, should made readily available from the developers of RCH4. The fact that it is not raises grave doubts in my mind about the product’s efficacy and safety for use.”
Actually Diana, they do. See https://www.als-new-drug.com/rch4-clinical-data
I have been on it now for more than three years and it really helped
February 21, 2021 at 6:29 pm #17850
I’m having an issue with being able to add mum’s AlSFRS chart.
Can you please provide instructions
February 21, 2021 at 7:05 pm #17851
Unfortunately, you cannot add a chart or photos into your comments – – only links. Maybe it would be best to tell us a summary or highlights from the chart? Like if there is improvement, how much and what you observe.
February 27, 2021 at 10:18 am #17915
March 12, 2021 at 9:26 am #18018AnonymousInactive
Researching RCH4 has me stumped. The “Clinical Data” they publish on RCH4 Clinical data (als-new-drug.com) has a lot of omissions.
1) What was the method of selection for participants during the studies reported on the web site? Were there people turned down or were all applicants accepted? If some were rejected, why? How many?
2) How many subjects were involved, and where is the study they claimed they submitted in 2011 (?). Were there any other studies, and if so, why don’t they publish them on the web site? If they cannot get them published in a professional journal, why not put them out there for the rest of the world to see?
3) Studies are essential in research and development and are based on results from prior work. Each time a study is published others can try to repeat the study to see if the results are valid. If multiple researchers get the same results, it becomes a stepping stone for advancement, and new progress is built on established empirical evidence from past studies.
4) How can the people behind RCH4 justify ignoring the rest of the world, and deny what appears to be an effective treatment for ALS patients ? How many people can they afford to treat, while they deny the rest due to their unwillingness to disclose everything about this product? Without proper research, nobody is going to lend any credibility to RCH4. How many thousand pALS have passed because they have not had an effective treatment like RCH4 available?
The product is injected into muscle, so there has to be a basis for the reason it works, and there is no government that will approve its use without proper studies being conducted, to include trials. These are all points I pulled out of my head as an observer on this issue. I do not dispute that RCH4 does or does not work, only that after this amount of time, the people behind it should have taken affirmative steps to get RCH4 into the mainstream.
March 13, 2021 at 2:11 pm #18027
The RCH4 charity first helped my sister back in 2014 and my mother since 2016. Here is their ALSFR chart:https://i.ibb.co/Cs6Ggdn/zzzzSC.png
To JohnS who asked how they select PALS for treatment and why they have done nothing to move it forward. We are taken on a first come first served basis if / when they have the money. There are no selection criteria. See their website.
From Google, it costs about $41,000 for every patient in a clinical trial. For a small voluntary charity that’s a show stopper. Years ago they offered the whole thing for free as a gift to the ALS Association and the Motor Neurone Disease Association who both refused it.
Hope this helps answer your questions
March 13, 2021 at 8:29 pm #18039AnonymousInactive
That did not answer a single question. The representation that the people behind RCH4 are medical professionals with immense experience tells me that they should know what needs to be done to get RCH4 into the mainstream. Studies, reviews, documentation are all lacking from public view. Typically, this information is published in professional journals, but they quit even trying to get that done. Some of the journals will take anything, so its not like they bent over backwards to get there, ya know?
They post all these numbers and figures, and a few people say they have been helped, but thats not going to get the job done. There are ways to do things right, and then wrong, and from what I can see, this was wrong. Publish professional studies on RCH4. If Journals will not take the studies, post them online, for the entire world to see. Answer questions. Open the books to show the world what has been done instead of hide it because that builds mistrust.
I am glad that your relatives, as well as others, have benefitted from RCH4. I just think that it should be available to everybody that wants it, not just a few that some anonymous donor (foundation) can afford. Instead of protecting it and keeping it hidden, put the light on top of the mountain so everyone can see it. If there is nothing to hide, and everything is true, a lot of funding would follow.
June 15, 2021 at 10:40 am #19528
You say that studies, reviews, documentation are all lacking from public view. The charity that provides RCH4 for free shows all that stuff on their website. RCH4.org
June 15, 2021 at 12:03 pm #19530
I agree with Jon, but also with Tomasz Boki. Clearly the communication of the RCH4 team could improve.
However I agree that does not mean that RCH4 is not without interest.
I have two remarks:
– Why should we expect that this RCH4 discovery could not be made by another group/ For example look at: doi.org/10.1212/NXI.0000000000000937
In conclusion, we observed a decline in TDP-43 reactivity in patients with ALS. The apparent decrease in levels of high-affinity/avidity anti–TDP-43 NAbs correlates with and thereby predicts disease severity. The decline in high-affinity anti–TDP-43 NAbs might impair the capacity to block and neutralize toxic proteins, and although this requires further investigations, data from this study provide rationale for immunotherapy against aggregated TDP-43 as a promising strategy to slow progression of sporadic ALS.
Several companies are working in this area, for example Promis Neuroscience, IMStar, AC immune.
JP Julien (Imstar CTO) had patented (US10202443B2) such antibodies in 2014, well before RCH4 appeared on ALS forums. They didn’t were able to setup clinical trials, probably because clinical trials need a lot of resources out of reach of a small biotech.
– What will happen to the pALS who receive RCH4 when the charity will have no funds?
June 21, 2021 at 7:00 am #19584
So the suppliers of RCH4 must be supplying someone data on this drug, as I believe they have just been granted Orphan Drug status which is great news. I would say that if the FDA could scrutineer the drug and believe it has some benefits others might start to take it seriously now and get things moving.
My wife is up to nearly 5.5 years now on RCH4 and is still holding in at an ALSFR-S score of 45 which is just amazing.
June 21, 2021 at 11:47 am #19593
> as I believe they have just been granted Orphan Drug status
@Marlon+Ness, I just checked the 2020 and 2021 pages of FDA Orphan drug status, and I can’t find any drug which was granted Orphan status for ALS for those two years. But that does not mean anything, for example Spinogenix claims it had been given this status for ALS this year, yet it can’t be found on FDA’s web site
Please kindly can you give a pointer to a FDA web page?
June 21, 2021 at 3:52 pm #19603
June 22, 2021 at 4:50 am #19610
Thanks for the link.
In the previous message you wrote:
as I believe they have just been granted Orphan Drug status
Do you agree that this link shows it is NOT approved for Orphan status?
FDA Orphan Approval Status: Not FDA Approved for Orphan Indication
June 22, 2021 at 3:55 pm #19622
That’s how I read it too, Jean-Pierre… “not approved.”
June 21, 2021 at 12:12 pm #19596
In 2021 the European drug agency granted Orphan status to Ganglioside GM1 for treatment of ALS. It was presented by 3R Pharma Consulting GmbH, a consultancy organization which represent probably another organization.
As far I know there was no clinical trial about Ganglioside GM1.
June 24, 2021 at 7:52 am #19639
Jean Pierre, RCH4 does indeed have Orphan Drug Designation (ODD) status. That is a different thing to Marketing Authorisation (MA).
ODD is a major step in getting marketing authorisation.
Go to https://www.accessdata.fda.gov/scripts/opdlisting/oopd/
Put in RCH4 and you will be seen that it is certainly designated.
June 24, 2021 at 4:52 pm #19653
A Orphan Drug Designation only means someone has asked FDA to examine the commercial preparedness of a drug.
Anybody can ask this to the FDA (try it)
It was indeed examined, but it was rejected. It is written in the link you posted.
Now, there is a lot of misunderstanding here. The FDA will not give an authorization market to a drug simply because someone has filled in a form on Internet. To have some odd of success, an organization needs to prove to the FDA it can spend $20M on clinical trials and that they have at least several dozen MD/PhDs in their staff to back up their claims. It does not work the other way round.
There are many ongoing scientific work on ALS drugs and that have public information about them.
You can look at JP Julien’s team for serious studies on how to stop ALS. Brian Kaspar (the designer of Zolgensma) is even working on therapies to replace motor neurons! So is Xiang-Dong Fu, in the team of Don Cleveland.
Several companies (including Promis Neuroscience) have designed TDP-43 antibodies and even nanobodies. Other teams have designed CPPs or PROTACs against TDP-43.
And if there is a thing that makes me sure one ALS drug will soon get market authorization, it is that TDP-43 aggregates are found also in Alzheimer disease. Alzheimer is not a rare disease.
June 27, 2021 at 12:29 pm #19685
Jean-Pierre you said some interesting things about the FDA. I have taken the trouble to examine their site.
You wrote-A Orphan Drug Designation only means someone has asked FDA to examine the commercial preparedness of a drug.
It has nothing whatever to do with commercial readiness.
Anybody can ask this to the FDA (try it)
True. Yes, try it yourself Jean-Pierre.
But you at least must have a chemical formula or drug composition, scientific laboratory evidence that it works and an explanation why it does.
RCH4 must not only have had laboratory evidence but more importantly, they have years of evidence of safety and efficacy in slowing the progression.
Check it out yourself on the `net
It was indeed examined, but it was rejected. It is written in the link you posted.
No disrespect but you are wrong. Where does the FDA say it was rejected? They do not.
Now, there is a lot of misunderstanding here.
Yes, that is true. Unfortunately you do not understand a lot of things. Again no disrespect intended.
You confuse orphan designation and marketing approval. Application for marketing approval is public information. I can find no record of the charity ever having applied for marketing approval.
The FDA will not give an authorization market to a drug simply because someone has filled in a form on Internet.
Correct. Clinical trials are needed.
To have some odd of success, an organization needs to prove to the FDA it can spend $20M on clinical trials
Untrue. Where do they say $20 million must be proved?
and that they have at least several dozen MD/PhDs in their staff to back up their claims.
At least several dozen PhDs? Again, where do they say that?
There are many ongoing scientific work on ALS dgs and that have public information about them
How many of them have slowed the decline in function? Not one.
Out of the last 80 trials of ALS drugs how many slowed the ALSFRS progression in the PALS population tested? Not one.
RCH4 has slowed my mothers decline for more than 3 years without side effects. See her chart above as at last January.
Months now of RCH4 treatment 40
Monthly decline from onset to start of RCH4 -1.29 ALS points
Monthly decline since start of RCH4 -0.075 ALS points
Therefore decline rate slowed by 94%
I have no connection with the RCH4 charity but mystified about the reason for all the damaging negativity towards them by people who know everything.
The charity provides support, the only drug that really works and never ask for money.
I mean no disrespect to anyone or their opinions but things are said which are uninformed, unfair and unacceptable thus damaging the interests of other patients.
You may believe that RCH4 is useless despite clear evidence to the contrary, but please do not deprive others from the chance of extending their life. .
June 28, 2021 at 1:43 pm #19707AnonymousInactive
I spent a lot of time over several weeks looking for what’s up with RCH4. I think I can sum it up as the people behind it have not complied with current standards of both testing and submission. I looked at the literature they made available on their site (s) and it is very slim on actual studies. Studies must be submitted to a competent journal, and the journal will proceed to have specialists in the same field review the data prior to publication. The RCH4 submissions never went that far. They never presented complete testing data, development data, or completed submission documentation, to a journal of competent review.
Until they get off the pot and put this together, nobody is going to benefit from RCH4, no matter how effective it is. If the work they have done is real, and I am not saying it is not, but the researchers carry the burden of proof to the right authorities, in a way that it will be accepted. Judging by the costs of RADICAVA (149k per year) it is not about if there is a profitable venture, but the RCH4 development has to be strictly in compliance just like all the other research on the market. There are no shortcuts.
RCH4 almost got there once, and at the very moment that they were given the chance to present all of the data and research, they withdrew it. It was not about money, because there are lots of investors who would willingly finance ventures like this because after it is approved there is a huge profit incentive. So no matter how many people they find, no matter how many they help until they go through the bureaucratic nonsense to get the drug approved it will never make it to market.
It is a shame that they refuse to take these steps because thousand of us die every year that could have been helped.
June 28, 2021 at 9:49 am #19703
<div>Jean-Pierre you are mixing up orphan drug designation with marketing authorisation approval.</div>
<div><span style=”font-size: medium;”>Two completely different things. Designation is a step towards approval. Steve</span></div>
June 28, 2021 at 1:10 pm #19706
I agree with you Steve, it’s not the same thing.
Do you have more information about what to understand with this text:
FDA Orphan Approval Status: Not FDA Approved for Orphan Indication
June 29, 2021 at 9:36 am #19717
<div>Hi Jean-Pierre you were wrong about a lot of things but thats OK. Answering your question is simple.</div>
<div>”Approval Status Not FDA Approved” means the drug does not have marketing approval</div>
<div>”Designation Status Designated” means the FDA has awarded it designation as an orphan drug.</div>
<div>I am interested in Jeannete questions. Where does the FDA say $20 million is needed and where do they say that at least a couple of dozen PhD`s are needed.</div>
<div>It is advisable to be careful making statements here and elsewhere. Thanks Jean-Pierre.</div>
June 29, 2021 at 5:44 pm #19721
As aretired now academic researchar I can see that you have never been involved in any drug research nor have you ever tried to raise money for it (if not ALSTDI or one of the Associations, it
s impossible). If I am wrong, kindly say how many scientific papers you have published and their references.Complaining about the RCH4 charity who give a lot and ask for nothing is odd. You are hurting other PALS by undermining the future of the charity. You cannot deny that is what you are doing even if you mean well and its unintended.
You suggested that the charity get off the pot. You should do the same, stop criticising and ask them for help if you are a PALS.
July 23, 2021 at 11:32 am #19999AnonymousInactive
It really does not make any difference what you retired from. Neither does it matter what and where I come from either. The issue is, that you evaded the entire topic and created a straw man argument. You appeal to authority based on your own experience, yet you did not say a word about the issues I pointed out. That does not establish credibility.
July 6, 2021 at 8:51 am #19810
July 19, 2021 at 8:38 am #19937
Mum continues to remain stable with RCH4, no change in her ALSFR score.
July 21, 2021 at 9:05 am #19978
July 23, 2021 at 11:33 am #20000AnonymousInactive
I know everyone who is posting on the RCH4 treatment is convinced. My issue is not with them, but it is with the failure of the drug developers that have failed to bring the product to market. It’s not something that should be ignored because if the claims they post are true they should be able to bring it to a scientific journal and get it published. There are dozens of no-cost, open-access journals that publish research. Most of them are peer-reviewed. To claim that they cannot present the required research because they cannot afford it is incredible. There is no reason why they just quit trying and now refuse to find investors to monopolize the treatment and save thousands of lives every year.
Whatever the reason, it should be brought to light instead of hiding it in the dark.
July 24, 2021 at 12:16 pm #20017
ATTN: Tomasz Boski, John S, Karl Wigler, and all members of this forum…..
Amanda and I need to step in and remind you of our forum “rules of conduct.”
#1 Rule: Please Respect Others.
“The purpose of the forum is to provide a platform for the exchange of ideas. Occasionally, conflicts may arise when people voice opinions. Be courteous when disagreeing with others. Debating the opinion is appropriate, however, criticism against the originator of the opinion is not allowed.”
Examples and the consequences of disregarding this rule can be found here:
Amanda & Dagmar
July 24, 2021 at 3:15 pm #20021AnonymousInactive
This is the truth:
ALSUntangled 51: RCH4, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, DOI: 10.1080/21678421.2019.1675282
Published review of RCH4 by a valid research entity.
“RCH4 is described as “an investigative new drug” (6) that “does not have Regulatory Authority marketing approval in any country” (6). A United Kingdom-based website states that it will
“probably slow the progression of your ALS” (6). In the words of patients who believe in RCH4,
this website “is not the easiest or most organized” (7). Information about the product is interspersed between cartoons (8), stories of famous scientists whose breakthroughs were initially met with skepticism (8), controversial medical advice for PALS (“do not go to the gym” (6), “we do not recommend winter flu jabs” (6), attacks on respected clinicians, scientists and institutions in the ALS community (9–11), and cynicism about academia itself (12). Neither the molecular structure nor the chemical class of RCH4 is described. The RCH4 website authors identify themselves as “an informal charity group of retired scientists with lifetimes of experience in membrane osmosis and immunity research” (8). Our Pubmed search identified no published papers on RCH4, and we recall no scientific presentations about it at ALS meetings we have attended. The RCH4 website claims its submissions for publication and presentations have always been rejected (12). In fact, as recently as 2018, a “Michael Curan” had an abstract on RCH4 accepted for poster presentation at the Motor Neurone Disease Association’s International Symposium (13,14). No authors appeared to present this abstract (14).”
I had no part in producing this review/opinion, but I know it was published based on the fact that it carries a DOI that I can verify. DOIs are in wide use mainly to identify academic, professional, and government information, such as journal articles, research reports, data sets, and official publications. All kinds of excuses can be created about RCH4, but the facts do not change. Until they do what is required to ensure that their product is safe and effective no country will approve its use, no matter how well it works. At this point, RCH4 exists in the realm of pseudo-science because “a group of famous scientists” that have retired is not able to get funding, nor present the research on the drug for review. But they can and do ship the product across borders to their select recipients. Every other drug developer that was ever developed has found a way to meet the international standards, yet the “group of famous scientists” behind RCH4 just can not get around to do what they must know needs to be done to get the product to market.
We hear about grants pretty regularly that are given to help pay for research to cure ALS. If they can show the results that people here claim, why don’t we hear about it? Where are the studies proving that they are doing what they claim is being done? What DOI has been awarded for RCH4 research papers? I have an open mind, but I am not a fool!
October 10, 2019 at 4:29 pm #13447
Karl — I’ll concede that the folks at RCH4 are experts when it comes to their own product. But they shouldn’t delve into other areas such as lifestyle recommendation: specifically exercise.
- My impression is that someone in RCH4 had a past bad experience in a “gym” as well as with a fitness trainer, which resulted in their blanket statement to avoid gyms and physical therapists!
- Don’t go to the gym? Ok, what about a workout at home? Is that OK? Is it the equipment? There’s lots of adapted equipment on the market. Or, exertion? Obviously, the person who wrote the statement never had ALS – – it’s impossible to over-exert; I may “want” to do 20 repetitions, but in reality, can only muster 1 or 2. Some days just putting my socks on is exerting! (ALS humor here! lol)
- Medically-trained physical therapists know the proper exercise parameters to give their patients who have ALS. Trust them.
- Hypermetabolic? That doesn’t mean avoid exercise (strenuous is not possible; see my comment above) rather, do your exercise and then maintain your weight by consuming more calories. Eat more! Not, move less.
- I agree regarding the sense of humor. In fact, current research shows that having a good emotional well-being helps to slow ALS symptom progression: https://www.sciencedirect.com/science/article/pii/S240565021930022X#bb0090
July 24, 2021 at 11:57 am #20013Karl WiglerParticipant
john s if you are a pALS please ask the charity for help otherwise stop complaining and making remarks that have nothing to do with this thread which is about research. Anyway your post is wrong. They do not make any claims and journals are irrelevant to marketing.
I looked at their site https://www.als-new-drug.com/cost To bring it to market would cost millions – where is the money to come from? Tomas was right you know nothing about raising money. Drugs are the most risky investement of all. From google – “Biotech stocks are high-risk investments. Small- and mid-cap biotech stocks are the most high-risk, high-reward stocks.”
July 24, 2021 at 3:16 pm #20022AnonymousInactive
I am talking about research. See below, the same thing I first posted above. What exactly is wrong with this? If you think it is wrong, you are invited to show us all the studies that they submitted to competent and recognized journals. The studies are steps in compliance with current scientific standards, or what would be the normal way of developing drugs pretty much worldwide. You are welcome to prove me wrong. Complaining about costs and telling me to ask the same people who failed to comply with international norms will not do that.
“I spent a lot of time over several weeks looking for what’s up with RCH4. I think I can sum it up as the people behind it have not complied with current standards of both testing and submission. I looked at the literature they made available on their site (s) and it is very slim on actual studies. Studies must be submitted to a competent journal, and the journal will proceed to have specialists in the same field review the data prior to publication. The RCH4 submissions never went that far. They never presented complete testing data, development data, or completed submission documentation, to a journal of competent review.”
- The topic ‘RCH-4’ is closed to new replies.