Announcement

Collapse
No announcement yet.

Rch4

Collapse
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Another month has passed and I have experienced no measurable progression. The only drug or supplement I take for ALS is RCH4.

    Disclaimer: I am in no way involved with the RCH4 Charity besides the fact they do supply RCH4 at no cost to me.

    Comment


      This shows my decline before RCH4 and after RCH4. It is current as of yesterday. zzz.png

      Comment


        ChrisP, in answer to your question, the suppliers of RCH4 are looking for sponsors to take the drug through trials. If you know anyone with a few Million to do this let me know. The sooner it gets through these trials, the sooner it gets to the wider ALS community.

        My wife has been taking for 2.5 years now and she has had no progression since starting the drug. There can be no other explanation for this apart from taking RCH4. Her two medically identical triplet sisters and her mother all died within 18 months of onset of this awful disease.

        Below is her latest ALSFR-S chart and progression as I've not uploaded lately.

        09_Chart.jpg

        Comment


          It has now been 8 months since my mother commenced using RCH4 . Her ALSFRS scores have not declined in this time and she continues to remain stable with no side effects. Much thanks to the charity for their ongoing support and information all provided free of charge.
          Below is her latest ALSFR-S chart
          ALSFRS_Decline_Rate.png ALSFRS_R_score_month_8.png

          Comment


            I will post here my latest evaluation on PLM, I post not to boast or to crow. I wish everyone could get a chance to try this helping hand.

            Hi All. Still feeling positive. Now today 44 +100. My dosage increased ( 27/9 ) to 0.6ML x 2 weekly as my slipping was still to fast. My legs are very weak and my arms are weak also especially my left one so my progress continues but estimated 50% slower that before which kicks both Riluzole and Radicava into touch on statistics. After now 37 Injections I/M no side effects. Communications and any required advice promptly returned. Can you believe this is free, well believe for it is true. Let us hope someone that with vision and funds will realise what a gem this is. Take care all.. TIANDB

            Comment


              It has been a while since last update from me on the forums.It is unbelievable to think we were holidaying in Mexico 3 years ago, before starting RCH4, and we had to move my wife around in a wheelchair because she was exhausted after the disease had not long kicked in. She has not used a chair since being on RCH4 which is great. She has weakened a bit in her legs over the last 6 months which I think is not helped by her poor diet (she is determined to keep a good waistline which means she avoids eating carbs). Otherwise she is still fighting strong and living a near to normal life. Attached below is her latest chart. No good news yet on getting this drug into Phase II trials which is disappointing when a drug doing so well just can't get a leg up, but hopefully 2019 will bring something.

              Jan 19.png

              Comment


                Our mum has been taking RCH4 for a year now without decline in her ALSFR score. Mum has lost most of the use of her arms and hands, but we are extremely grateful for RCH4 as she continues to remain stable.
                Our hope is that the Charity gains the recognition and funding it deserves to bring it to phase II trials.
                Below is her latest ALSFR chart and progression.


                Comment


                  Taking RCH4 for 11 months now. Some rough information for anyone who is interested. Upon diagnosis early 2018, I read every forum available, read up on fda approved treatments, read clinical trials, joined forums, and reviewed every item from alsuntangled and I came to realize that this was worth at least reaching out to determine options. I thank god I did. The RC Charity group has now given at no cost 11 months and beyond of supply. Based on personal experience, I cannot fathom that we are just an extremely lucky or outlier group, based on all of the data from PLM and users who've stepped up to speak of their slowed / halted progression.

                  ALS stats:
                  - Officially diagnosed 2/2018, EMG and many other tests confirmed
                  - Began taking RCH4 4/2018
                  - Score now has declined 2 points in 11 months
                  - Scores declined from 43 to 41 with drops in month 1 and month 6->7
                  - it is tough to say precise drop prior but I would estimate this is at least a very large % reduction in progression since the muscles seemed to waste so quickly before, I was going to guess 70% but I can see from the workbook we complete each month it's -.18 / month since beginning RCH4 vs -.58 / month prior
                  - weight has increased 20lb from 85kg (187lb) to 94kg (207lb)
                  - have only lost dexterity in hands and some strength, other than that no serious progression to date
                  - FVC and care team from ALS clinic locally have seen the same consistent lack of progression and indicated in test scores

                  I pray someone is able to move RCH4 forward. PM if you need any information and I'll try to provide what I can.

                  Comment


                    I have read some very positive feedback about RCH4 on this thread. I hope that the good results continue for the patients who are using it.

                    Is RCH4 currently being used by patients as part of a drugs trial, or maybe it has already been approved/licensed for use in some countries?

                    Best wishes,
                    Kayleigh
                    Last edited by Kayleigh; 5 February 2019, 14:53.

                    Comment


                      Another month has passed and I have experienced no measurable progression. The only drug or supplement I take for ALS is RCH4.

                      Disclaimer: I am in no way involved with the RCH4 Charity besides the fact they do supply RCH4 at no cost to me.

                      Currently we are awaiting an investor to step up to help bring this through trials so RCH4 is readily available to PALS worldwide. RCH4 is a very legitimate treatment for ALS and detailed information was provided to the ALS community several years ago for FREE! No one took advantage then. Now with more of us using RCH4, it is evidence it works better than anything currently offered to us PALS. RCH4 is effective in over 80% of patients......REGARDLESS OF THEIR PROGRESSION.

                      Comment


                        I have to say - I felt pretty good upto the the 2 year mark after diagnosis - no real change in condition. Then a small step down at the 3 year mark - and a big turn down at the 4 year mark. Im starting my 5th year. The only scale I would rely for proof positive is a combination of MRI scans and MUNIX (electrical muscle testing - determines degradation in neurones per muscle group) - it is an objective test not prone to human feelings.

                        If RCH4 works for you - go for it - I wont.

                        Comment


                          Sportingmac. I am just coming up to 5yrs it will be my 70th birthday in May and was formally diagnosed two days after 65th. My MND just ALS and been on Riluzole and stuff for soliva. I cannot walk and talk but still have control down my right side. I first had pain in my left hip and assumed too long in front row. Bit of a struggle at moment as care/wife just had knee operation but local carers being great getting me in out of bed. Best wishes John

                          Comment


                            Good to hear your story about mnd. I was recently diagnosed and it scares me so much. I am 61. Mine started in my hands, and now my legs.
                            love to you and your wife
                            Sheila

                            Comment


                              Originally posted by JAY TEE View Post
                              Sportingmac. I am just coming up to 5yrs it will be my 70th birthday in May and was formally diagnosed two days after 65th. My MND just ALS and been on Riluzole and stuff for soliva. I cannot walk and talk but still have control down my right side. I first had pain in my left hip and assumed too long in front row. Bit of a struggle at moment as care/wife just had knee operation but local carers being great getting me in out of bed. Best wishes John
                              Hi John,

                              There are a lot of stories from ex-sportsman (my moniker) who succumb to MND. Went to a sportsmans dinner at my local rugby club and sat next to Doddie Weir - explained to him why I was wheelchair/crutches at that time - he said he wouldn't wish that on anyone - sorry Doddie.

                              I was diagnosed with full blown ALS 31st October 2014 - just short of my 63rd birthday. Started on Riluzole straight away - has it helped - I doubt I will ever know and rely on research to tell me it might ( I queried the Neurologist about the stats and he said one thing that has become apparent was it delayed the Bulbar phase for up to 12 months) so I take it live in hope he was right.

                              John - do you have a ceiling hoist fitted? I got mine fitted ahead of my immediate need and absolutely thankful I did - it took an enormous strain off both my carer and my wife (First Mantra is: care for the carer and I will have all the care I need) - I think you will understand why.

                              Happy to share all my experiences with any one - as most seem to do on this site thankfully. Great source of inspiration and thought provoking solutions to every day issues (second mantra: Mind the gap) - I have found there is always a gap between the aids offered and their workability.

                              I give my life story to the CCG and Hospice volunteers - very eye opening - for them.

                              Take care John - wishing you a pain and stress free life.

                              Chas
                              Last edited by Sportingmac; 21 February 2019, 18:49.

                              Comment


                                From the www.als-new-drug.com , the RCH4 charities website:
                                "Many of our PALS friends went to the gym more than once per week, were fitness enthusiasts, were in the military or sold supplements. Therein surely rests a lesson. If you are a PALS, do not go to a gym."

                                I have found this to be extremely correct. Anytime I've put my body under stress, whether it be exercise or severe temperature change, I've experienced progression. Get yourself a comfortable recliner in fron of the television, a tablet and make people do things for you. Your job as a PALS is to keep your mind sharp and physically a sloth. Some very light stretching doesnt hurt but nothing that has you working or trying.

                                Someone also mentioned that MRI scans are objective tests not prone to human feelings. The ALSFRS-R score is the most objective of all - it records the monthly status of physical movement. That is what matters to a PALS - movement ability. EMG and MRI scans are academic.

                                Comment

                                Working...
                                X