Unapproved ALS Drug
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jennyinfrance
Active member
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- Feb 12, 2015
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- 45
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- PALS
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- 06/2013
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- Dordogne
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- Savignac Ledrier
Hello Mich, my name is Jenny and I have Bulbar ALS since June 2013. I can no longer speak or eat ( I have a PEG feeding tube). I was very interested to read your message and would like to try this peptide. I found the link for their website and have completed the form. I do not have a very sympathetic neurologist. I have asked him to put me forward for several trials but he just ignores my requests so I may have a problem there. Anyway, I am glad it is working for you and wonder if you have had any side effects? kind regards
notBrad
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- Feb 26, 2015
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- 04/2015
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We should take up a collection to hire someone to repeatedly slap your neurologist silly...:twisted:
Osiyo
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- Aug 27, 2015
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- PALS
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- 07/2015
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- Pohlheim
the new drug is called RCH4 Peptide, I have signed a consent form, and filled an evaluation of sickness they have contacted my neurologist, I sent them my diagnose. and checked out the link they sent me in documentation; Main
The sponsors of this web site are a voluntary group of retired professionals from different countries. Based in Europe, they have no connection with any other entity and have no external financial support.
Their objective is to bring a potentially new horizon to those affected by ALS - irrespective of their financial status.
This web site is updated about twice per year. Last update September 2015
There can never be any guarantee that any drug is safe for everyone.
Millions of people take Aspirin and eat peanuts -but some cannot.
Information on the new drug RCH4
The drug we are testing is called RCH4. It was and is being tested for the past five years with people who have confirmed diagnosis of ALS. There is evidence that it is better than `Riluzole`, the only approved drug for ALS.
Safety:
We have not seen any side effects associated to the drug itself but since the drug is administered as a small injection, you may experience temporary swelling where the injection entered the skin. We know of no other problem or risks. Because we do not know if the new drug may agree with you, you must accept full responsibility for any side effects or outcomes.
I have no farther information as of this moment, have computer, will post.
Be blessed, now you know
Blondrea
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- Oct 27, 2014
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- CALS
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Hi, Mitch. Did you need to get your neurologist's permission to get this drug? (I see this on their website: It will first be necessary for you to find out if your doctor is willing to try to obtain permission from the drug Regulatory Authority in the country where you live to treat you on compassionate grounds.)
Also, do you have someone who gives you injections?
THANK YOU!!!!!!!!
Also, do you have someone who gives you injections?
THANK YOU!!!!!!!!
affected
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Janeg1 this thread started with the OP posting the link, please read the first post here.
mich5
Distinguished member
- Joined
- Apr 20, 2012
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- 275
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- 01/2012
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- west
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- mid
ive been having trouble with my tobii. even if im able to log on to the forum, i often have great difficulty typing. im working on it, hopefully it will get better.
ive had no side effects. ive done everything that theyve asked of me. i would encourage anyone who has questions to contact the group thru their website. the link to their website is in my first post.
ive had no side effects. ive done everything that theyve asked of me. i would encourage anyone who has questions to contact the group thru their website. the link to their website is in my first post.
kenschatz
Active member
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- Oct 1, 2014
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- 41
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- PALS
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- 07/2014
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- AZ
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- Scottsdale
Michael,
Yes, i did. After much discussion, he basically said in the end "all things considered i think it would be fine to do the RCH4". They require that before they will send. The Dr. covered himself pretty well, said it was my decision and responsibility. I also sent my doctor a letter, that he did not ask for, taking full responsibility for my actions. I have exchanged many emails with them, i believe I understand their position, and why they are doing it this way. I also sent them copies of my blood work, filled out their ASFR spreadsheet, and gave them a copy of the diagnosis. Don't know if it works, but I'm on some alternative medicines, don't think current stem cell technology helps, and the way they run trials,especially since I have a feeding tube, and bipap at night, precludes me from trying the other things that are out there. Good Luck in your endeavors!
Yes, i did. After much discussion, he basically said in the end "all things considered i think it would be fine to do the RCH4". They require that before they will send. The Dr. covered himself pretty well, said it was my decision and responsibility. I also sent my doctor a letter, that he did not ask for, taking full responsibility for my actions. I have exchanged many emails with them, i believe I understand their position, and why they are doing it this way. I also sent them copies of my blood work, filled out their ASFR spreadsheet, and gave them a copy of the diagnosis. Don't know if it works, but I'm on some alternative medicines, don't think current stem cell technology helps, and the way they run trials,especially since I have a feeding tube, and bipap at night, precludes me from trying the other things that are out there. Good Luck in your endeavors!
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