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New member
Jan 17, 2007
Loved one DX
new jersey
I had written to this forum a while ago and have not really had any response. After reading through alot of the information, not for nothing had to go to the Dr. myself. Got completely depressed so sorry to say that, the Dr. put me on med's took for two weeks and decided no way not for me.
Went to the Dr. with my Mom for the first time and it was a real wake up call. The dr. was ok. but, I was a little -- well a lot sad. but, the doctor gave my mom a prescription for rilutek please can anyone tell me what that is. When I asked the Dr. of side effects she never really told me. Is anyone on this and if so, what does it do?
Thanks so much Tracy
Information on Rilutek

Tracy, I have a brother with ALS, Last week his doctor told us that Rilutek was very expensive and that insurance companys did not cover it. I thought we were for sure doomed. (and this is an MDA Doctor). They should have information avialable to patients. After researching I found through this link that I am posting, there is help with people who have limited income or insurance limitations with Rilutek, please read:

Provides information about NORD- National Organization for Rare Diseases
This sight is very helpful.

Look under medication assistance program, it will tell you the medications available, and how to apply. They are very helpful. They responded to me immediately. By the way with their help I fould out my brothers insurance did cover it. I called the Doctor's office and demanded it be called in right then. Please don't always depend on your doctors. They are there I think for theit interst, rather than the patients. Because I persued this my brothers life will be extended a little longer. No thanks to the doctor. Lorie in ALabama
Thanks for filling in the blanks Lorie. I knew there was a US program but couldn't remember the name. That's what we try to do here. Help each other. Thanks again and welcome aboard.
Stem Cell Research

Al, I am struggling very badley with my brothers disease. My heart goes out to each and every person and their families. I stay on top of this ALS disease and I'm always full of information. Please read below:

In June the congress will vote on Stem Cell Research again. For an easy way to keep up on it and to contact your Senators through this site, Please go to:

This is really critical. Lets all have a hand in finding a cure.

Bless you,

Lorie :-D
My Blue Cross covers Rilutek if I use their mailorder prescription service.

As far as stem cell therapy is concerned, I don't want to live off the bodies of babies; seems too much like being a vampire.

stemcell research

I think if Bush had it it would pass tomorrow. It will get
passed someday I think when the right one gets it. I dont
want to sound bad but thats the way things get done.

Davis 07
I Agree!

I Agree Davis, I am still pushing all of them. I won't let up. I told my Senators and Congressman that I voted for them and also did my Brother Timothy with ALS. Now its time for them to vote for him.

Don't forget:

Not all stem cell research is using embryonic stem cells. Some researchers here in Canada are experimenting using the bodies own stem cells. There is more than one side to most stories. Sometimes only the one that sells the most papers gets told.

And by the way we got a little off topic here. I thought this was about Rilutek.
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Al, I think we did get a little off track. Maybe there should be an area to discuss or post information on stem cell research. As long as we keep it nice.

Again I'm posting my link in helping people who have problems getting Rilutek.

Check Under Programs and Services. Medication Assistance Programs. Look for Rilutek.

It could go under ALS/MND Research news.
Happy Memorial Day everyone, I am on rilutek for PBP and have been on it for 3 months as far as I can tell I have no side effects. It is hard to tell if my symptoms are from PBP or meds. My Blue Cross Fed covers it. It is 1200.00 and I pay a little over 200.00. The Dr said it new to PBP but it is one of the only things available at this point. I take twice daily. I have found that I should not take it with hot drinks ie. coffee. It starts to dissolve in my mouth quickly. I suggest a cold drink. It makes my tongue kinda numb if taken with hot coffee. Al thanks for the info on using your own stem cells. sherry0459
This site I had contacted about the free Rilutek. The request a financial statement to determine need and if you qualify you pay just shipping.

God Bless
Capt AL
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Update on my rilutek. Blue Cross failed to inform us about Caremart, mailing . It brought my cost down from $206.00 (co-pay per month) to $35.00. that I can handle, some good news for a change. Sherry

This site I had contacted about the free Rilutek. The request a financial statement to determine need and if you qualify you pay just shipping.

God Bless
Capt AL

Hi, I'm trying to find a way to obtain Rilutek for my grandmother from Romania (83 years old). I bought her last month one pack from Australia and cost me AU $650. Anyone nows an organisation that offers Rilutek for people from Romania or Europe? Thanks a lot
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