Iplex!

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comfortable with ALS

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Good evening,
I just wanted to say hello to everyone. I am so excited to hear about the FDA approving IPLEX, I am sad though you had to be signed up by March 6th. They came out with the information Mar 10, so the rest of us will be throws into a lottery which is not good! It is rather very disturbing to my friends family and for everyone else out there who is suffering with this disease. I think we need to get on the FDA about this. Lets get on top of this. Thanks for taking the time to read my post. Jenny Boyd
 

hopingforcure

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Yepper doodle. Talked to the FDA TODAY, they said not enough medication to go around.. How do you like that.. I am like you deeply saddened.. not enough medicine... Iplex should be avaliable to ALL ALS patients..
 

patricia1

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I heard they did a study in italy last year. I am sure we would have heard something if it worked

pat
 

joelc

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I have read a lot about Iplex, don't be too upset for missing the trial. From what I have come to understand it is not going to help us. Don't get your hopes up.
 

rocmg

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hasn't been proven effective over a long period of time for large numbers of people... but if it worked for some people, maybe it could work for others? i don't agree with false hope at all... but even a glimmer of hope is better than nothing, is it not? i hope Iplex works for someone/people out there.
 

t34gib

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Why is there not enough to go around. Let's face it , there aren't that many of us. Do you know when more will be available?
 

kelly

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Jenny,
We had the same reaction about the March 6th deadline. I immediately contacted the address located on the email and they explained the lottery system. I feel even worse because my husband had asked me several times to fill out the application. AAAAAAAAHHHHHHHHHH! I feel like I totally let him down....even if it is not all it is cracked up to be.
 

hopingforcure

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We all just had are eyes set on other possible trials.this one seemed it would never happen, and then they pull this crap. It is not your fault. NOT enough that is crazy.. Get on the horn... Talk to senators.. Heck call whoever you like...This could end up helping us...many of us... Who knows maybe not, be we deserve a trial.. Get invovled guys get involved.....
 

rocmg

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I'm going to contact my MP. Everyone should at least have the chance to refuse. a chance at something is better than a whole lot of nothing... despite what the neuros say!
 

hopingforcure

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ON the right track... Start calling, in the AM... Let's make this happen friends..
 

jimmybob

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Iplex is not manufactured any more due to the FDA taking it off the market many years ago. Therefore, the supply is limited to the inventory on hand. Unless the drug shows promise, no more will be made.
 

comfortable with ALS

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Negativity!

Hey evryone, I wasnt saying Iplex was a cure! some of us have to stop with the negativity, this disease is already negative, and for some of you that have not researched Iplex i think you better take another look, because there are studies where it did help ALS patients. I actually know of 2 gentleman who were on it, actually got better then they took iplex away. So lets not always be DOOM and GLOOM! its ok if the FDA approved Iplex for ALS patients. Its ok if mayby they are on to something. Its ok if i have a little hope to see my daughter graduate kidnegarden? Its ok if i want to think my family wont have to suffer through this to? or isnt it? Ill never give up! and you better damm well believe when i hear some treatment for ALS i am going to research the hell out of it. My best friend keeps me very informed about this monster, she is very inteligent, she knows who she is.....love you.
 

Al

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I don't think anyone is being negative. Some of us are a bit leary of Italian drugs after the Lithium deal. You'll always find a couple of people that show improvement with a drug. Is it the drug or is it the placebo effect? No one knows. With Iplex, it showed improvement initially but didn't last from what I'm told. Stem cells do the same. All the people were saying is don't get all hyped up about it until they show it works in greater numbers.

AL.
 

comfortable with ALS

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I understand

I very well understand what you mean, i am not getting my hopes up for IPLEX, just a little happy i guess i am so scared everyday as life goes on. Hey Al how do i change my screen name? it doesnt make sense to have scared of als anymore since i got this damm disease.I was was watching a film by Ben Byer called INDESTRUCTIBLE he had ALS and the neuro on there said plain and clear THIS DISEASE IS NOT ALLOWED IN A HUMAN! thats how bad this crap is..omg lets pray for a cure everyone! thanks Al ill be talking to you soon Jenny Benny
 

Al

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Send me a PM with what you want to be called and I think I can change it. May have to get David to do it but it can be done.

AL.
 
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