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Thread: Rch4

  1. #211
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    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.

  2. #212
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    This shows my decline before RCH4 and after RCH4. It is current as of yesterday. zzz.png

  3. #213
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    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

  4. #214
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    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

  5. #215
    Forum Member TIANDB's Avatar
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    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

  6. #216
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    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

  7. #217
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    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.



  8. #218
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    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.

  9. #219
    Forum Member Kayleigh's Avatar
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    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; 5th February 2019 at 14:53.

  10. #220
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    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.

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