Taken from the RCH4 site
From patient data collected through 2017, we do know:
• RCH4 is effective in 84% of PALS treated, with a noticeable slowing in the patients rate of decline.
• 52% of patients treated with RCH4 stabilize for more than four months.
• 26% of patients treated with RCH4 stabilize for more than one year.
• 4% of patients treated with RCH4 have ALSFRS-R scores that actually improve.
For some PALS, the drug halts the decline of their ALSFRS-R score over time. Fewer PALS note the improvement, or reversal, of their ALSFRS-R score over time, but these results usually take much longer.
The cases of score reversal (improvement of the condition) may raise a question about the accuracy of their diagnosis. In case of the error in diagnosis, they can observe the efficacy of the drug applied to other neurodegenerative conditions. The patients themselves admit that as long as the treatment improves their function or slows down their decline, the name of their disease is irrelevant to them.
Unlike in trials, there is no inclusion or exclusion criteria for PALS who desire to take RCH4. The charity provides it on a humanitarian basis, which distinguishes their efforts from clinical trials. In clinical trials, there are inclusion/exclusion requirements that also include a percentage of participants to use a placebo.
PALS are taken on a first come first serve basis by simply filling out a form on the charities website. This avoids skewing of the statistical analysis in favor of the efficacy of the drug, unlike clinical trials where patients are carefully selected for best outcome. The charity has no placebo control group, and all of PALS receive the actual RCH4 drug.
Patients Like Me is a patient driven website that contains various tools for patients with a multitude of conditions to easily research and review treatments with ease. This is very useful as patients submit their own personal experiences and offer real life experiences outside of the environments of clinics and trials.
RCH4 is the only drug rated as Majorly Effective from actual diagnosed ALS/MND patients. With over one hundred reviews over several years, there are no side effects reported.
Please visit https://www.patientslikeme.com/treatment/rch4 to read monthly reports of RCH4 from actual patients using RCH4. A free and easy login is required to view site,
When asked about side effects, patients report small bruising or stinging when the liquid is cold. Since RCH4 is administered via a intramuscular shot using a syringe that is most commonly used by diabetics for insulin, the bruising and pain is not permanent.
How has the charity work out just how effective the drug is? Firstly they establish the speed of the disease decline for each person from the time of their diagnosis to the time each person starts on RCH4. This is done by patients submitting their medical testing, records and other pertinent information.
Since many PALS have not had their ALSFRS-R score assessed by a neurology specialist, it is difficult to establish the average starting score. In case the information from a neurologist is not available, the data relies on the information provided by patients,
Patients are required to send reporting containing a variety of parameters ranging from physical abilities to medical testing. By comparing the decline rate before to the decline rate after, the efficacy of the drug is established. The charity maintains a database which provides detailed, ongoing analysis of every PALS, in real time.
Since the beginning, the charity has collected the data from PALS, who all combined, were given approximately 6,000 doses of RCH4. Based on the evidence submitted through their monthly monitoring reports, the drug shows extremely strong potential to slow the progression of ALS, prolonging the lives of PALS.