Unapproved ALS Drug

[Mtzu]

Ken,

Thanks so much for the reply and the information about the process. I seriously doubt my Dr. will allow me to try it. That said, my fingers are crossed (unfortunately figuratively) that it works well for you. I hope down the road you have great news to share.

Michael

 

[Osiyo]

im taking a medicine that is new and not approved, it hasnt been thru clinical trials yet. its called RCH4 Peptide and ive been on it for 9 months. my als has not progressed and im a bit improved. my fingers are moving more (i realize 'more' is a subjective term. in march when my hands were at rest they were in a loose fist and i could only move my fingers in a group to close my fist tighter. now both thumbs and five fingers can move each by themselves - not like a normal person can move their fingers, but you can see them move when i do it. and my tongue is moving more, i can manage my own saliva now.) this medication is given to me at no cost to me. this group furnishes this medication to pals at no charge on a compassionate basis. they have spent their money to develop it and research it. they are ready to take it to clinical trial but dont have the funds. i email the RC Group every month with any questions i might have and to report on my status. more information is available at their website Main

i did not find this website but heard about it from a friend of mine who was taking it, she had no movement of her limbs and she was able to move one finger and one foot after only two months, but she got pneumonia and passed away last year. :-(

if the website doesnt show up here, please pm me if you are interested. please be patient if it takes a bit for me to reply, im using a tobii and if i get several pm's, it may take me a bit to answer.

Greetings Mich5,

I have been for the last 3 months in contact with this mysterious RCH4 Peptide organization. I have traced their IP Address to England, they are in jolly ole England, or at least a portion of them are?

OK I have received 2 amples that is a 3 month supply? Next, I took my first injection the 3rd of April, to see if there were any side effects, there were none so I took my 2 injection this day the 8th after waiting 5 days to be sure I did not turn into a pumpkin. Alright, the next injection is in 2 days, and then 3 days until I finish 2 weeks any 2 days during the week use 2 injections. Week 3 any 3 days of the week or 5 days of the week depending on the size of the injection whichever is more convenient for me.

I would like to hear from you as I am wondering how long it was before you noticed any changes. Please answer as it is important to know if you're still with us. Forgive my being so blunt but were all living on borrowed time are we not?

I use Tobii X with OptiKey, but thank God I can still talk very little and swallow thickened fluids. Just a pumping those calories in. So I am really interested how long before something happens. I don't have much time and I'll have to get a peg to feed myself.

Be blessed my friend and stay healthy and stay alive!

Jerry A. Sumner
[email protected]

I'm in Germany, Microsoft Certified IT Professional.

 

[Osiyo]

Greetings to all interested,

I have found 2 others here in this forum not including myself and we have Mich5 that are taking this RCH4 Peptide, 2 of us are newbies on this odyssey of emotions, fears and most of all hope. The darkness of this tunnel we call ALS is not nice and very frightening to say the least.

But to the light I have heard of a Mich5 not heard anything yet but will hope for an answer, and another one has been using since January with improvements but ups and downs. It's not a cure but it seems to have two things, no side effects and it does stop some of the symptoms or an increase in usage of some body extremity, hand, arm, foot, leg. Swallowing is easier for me and my legs feel stronger, my breathing has gotten better and my speech has really improve, i can almost shout. I thank God for using this drug to help in my hours of need, To Him be the Glory and the honor.

So until we all have decided to come out (no we're not Homo) but maybe just careful, and then we all can make reports of how this RCH4 Peptide has helped us?

Be blessed and by not means lose hope, hope is the last thing that dies!

Jerry A Sumner

"Osiyo" is of the Cherokee language meaning HELLO

 

[kenschatz]

If there is anyone on this forum,that is currently taking RCH4, please PM me. i started on the 20th of March.
Thanks,
Ken

 

[*ENV*]

I invite everyone who has experience with this drug to email me about their experiences. Hit me at env "at" ericvalor.org. I am conducting a review for ALSUntangled and am curious to know:

1. How you received the drug (liquid ampules, powder, etc.)
2. What was the process. Did you need FDA Compassionate Use approval?
3. What's the protocol: How much, how often, what metrics are used to judge efficacy and how gathered, how often are you reporting?
4. How are you being followed by the group behind this?
5. Who is your contact there?
6. What scientific literature (if any) was provided as evidence of efficacy?
7. What cost (if any) are you requested/required to pay?
8. more questions in future TBD

Thanks!


_ Eric

 

[Nikki J]

Thanks Eric. For those who do not know him yet Eric is very active in the PALS community

 

[*ENV*]

You can check out my initial reaction to this )based on current knowledge and years of experience) on my website: http://www.ericvalor.org/.

 

[affected]

Eric, thanks for your work.

I don't know you, but Nikki gave you some credit as someone very active for PALS. I wish you were active here

I don't know what got deleted but I followed your link and found you stated exactly what my gut reaction was to this from the beginning.

I hope you can come back here and share/remind us what you find out for ALSUntangled as you work on this!

 

[Nikki J]

All that was deleted was a duplicate post.

 

[notBrad]

Interesting posts and review on your site Eric although one thing did make me LOL. In your review you said "The website is cheap, poorly-designed, and unprofessional.". Have you looked at the ALSuntangled site?

If the professional quality of a site is a major indicator of the validity of the content then please, please tell the folks at ALSuntangled to get some help with upgrading the circa 1998 design... (seriously that design is an abomination)

 

[mich5]

yes, i am still alive. im doing well.

i have been taking this for a year, i have not sent them any money. ever. neither did my friend, who took this in 2014 but then, sadly, passed away from pneumonia. i am unclear as to how this group is scamming or taking advantage of me when theyve asked for nothing from me except information. this is not for everyone. if you dont like the look of their website, dont contact them. i will be contacting dr bedlak as i dont think alsuntangled is investigating this yet.

 

[*ENV*]

Yes the ALSU site is lacking. It was originally a placeholder and no funds are available to upgrade it. The entire project is a volunteer effort, not some company trying to get a pharmaceutical product to patients. However, the group which comprises ALSUntangled is very well-known and stated plainly on the bottom of every published review. The qualifications of the group are unimpeachable.

Yes ALSUntangled is investigating. I was asked to take the lead in gathering information. Mich5 and others, please contact me via email so that we can discuss gathering your information. This would include sending copies of your neurologist records to Dr. Bedlack for review, especially including notes taken during/after your treatment with this substance (hence the need to do offline).

I am more active on the TDI Forum. For anyone who doesn't know me, I was diagnosed in 2005 and have been living quadriplegic and on a vent since 2008. I use eyegaze for everything I do. I have extensive experience with scams and false hope, and have also learned a few things about pharmaceutical research and development over the years. Go to my website where you can learn more about me.

 

[mich5]

eric,

i will not be contacting you until alsuntangled contacts the group requesting information from them regarding their investigation. i don't discuss my personal information with anyone i don't know. i would suggest that others not discuss their personal information with someone they don't know either.

i ask you, again, how are they scamming me? they are a charity, have never asked for money, are always supportive, and i must submit my monitoring information to them every month. i have no connection with the group other than that they have and are helping me.

 

[*ENV*]

I did today send the group an inquiry on behalf of the ALSUntangled investigation. We have a rather standard set of questions asked of every provider of alternative treatment options. Your neurologist information would be shared with Dr. Bedlack not me. I would deal with copies of communication you have with the RCH4 group as part of my initial report draft. The same technique is used in every other investigation regardless who does the initial drafts. If you don't want to help then don't chastise our skepticism.

Perhaps we should set up something like "[email protected]" but again this is an unfunded volunteer project with Dr. Bedlack doing most of the work in addition to his running the Duke University ALS Clinic. It's a labor of love for the ALS patient community for which nobody involved receives any remuneration.

I don't know what is going on with RCH4. Based on my years of experience and complete lack of information currently made available by the RCH4 group, I made a call of caution for other PALS. Now I am looking for information to use for a scientific evaluation of whatever this substance is. You might not remember the lithium debacle of years ago but some PALS also swore that they were getting better using that. In the end it was found to be useless and the data in the initial published study were manipulated. I was part of the group of PALS who organized and commenced the patient-led trial project (ALS MND Lithium Treatment and Research for your reference).

So ALSUntangled has contacted the RCH4 people. Are you ready to assist our investigation now?

 

[Nikki J]

For what it is worth, I know who Eric is and what he has done. I personally believe what he says and if I were taking this, I would be willing to work with him. Everyone must do what they feel right of course