Need info on Rilutek use 2 plus years

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JustMe

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Greetings:

I posted this over on the PALS section and didn't get much in the way of answers, so I am trying here,

I need to know if anyone has any information about the value of Rilutek after two plus years? Back when I started taking it I was told it was known to help some people for six months or so. Lately I have seen a reference to it helping for a year or more, but no documentation.

I have been taking it for over two years, but since Medicare Part D Insurance companies here in Pennsylvania won't cover it after this year I will soon be doing without it. I want to know if I will be losing anything that might be helping.

I can not get an answer from my Nerro = my question is being ignored wherever I ask it. There is no way I can afford to buy it, so if insurance doesn't pay I am out of meds.

Any assistance apprediated,

JustMe -- RJG
 

Al

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If you search back there a couple of links telling of where you can get assistance to get it. Anybody remember what thread it was under?
AL.
 

ZenArcher

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I haven't been able to find any studies past the 18 month point. Do you go to the Hershey clinic?
 

JustMe

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Rilutek @ plus 2 yeaars

Yes, I have been to the Hershey Clinic a few times. Other than charting my demise they have not been of any great help, but that is apparently the way they are out here.

I asked several times ( via email to my Neuro ) about Rilutek and its long-term value to the ALS patient - - never have gotten an answer.

I asked about getting some kind of help with obtaining the meds - no reply except to have the NORD send me that amazing prying and intrusive requestr for a complete financial history. Even the Feds don't have all the information they were asking for.

In my nieve way I would have thought that an organization as large and MNS/ALS would have been able to arrange some means for its patients ( clients - that;s us ) to obtain the only medication on the planet which is supposed to help us, but apparently they don't do that either.

So here I am - come Jan. 2008 no Rilutek. Whatever - - - -

Just a bit disgusted with Central PA.

JustMe - RJG
 

Brentt

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When I replied to your post about the rilutek, I forgot to mention that I was placed on a vent in June 07. So after 2 and a half years it hasn't kept my ability to breathe up to par.
Everybody's different though, as you know.
 

Al

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ZenArcher

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I go to the Hershey clinic and have nothing but good things to say. They have helped me however they could and been very supportive. Send your question to the nurse coordinator and she will get you an answer.
 

jaelke

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Rilutek

My father (who died from MND a few weeks ago aged 81) was prescribed Rilutek from diagnosis back in 1999, so was taking it for more than 8 years. We like to think that it was the Rilutek that slowed the process of his deterioration.

I hope that there is some way you can get it for longer.
 

CindyM

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Hi Jaelke- I see this is your first post. Welcome. I am sorry to hear about your Dad. that's good input that you offered. I hope you decide to stick around a while, if you feel up to it. Cindy
 

Saubier

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Rilutek is supposed to be taken on an empty stomach. Anybody know how important that is?
 

freddiesnetty

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Is rilutek that important? My husband has refused to take that for about the past year, also the baclofen. Should he be back on this? He does use a bi-pap, but refused peg, and does not want a trach. I am new to this site and after reading some posts, I am not sure if taking him off of those meds was a good idea? I never know what to do. He went to clinic about 3 months ago and they said his breathing was at 17% and that doing the peg would be dangerous. So we didn't . He told me that he wasn't even trying when the did his breathing test, I don't know if you can "fake" that.?.? The neuro came to the house about 3 weeks ago for a home visit, and she was amazed that he was not bedridden, He has a wonderful sense of humor and replied " I am still here" Sitting in his wheelchair. He does not like going to the clinic, he compares it to the morgue. He and I get so depressed going there. We always refer to clinic as the black hole............Hee Hee, It seems like we go to another galaxy and then when we get home we have landed. Humor is what keeps us going. So know I am wondering how I will get his bi-pap adjusted, I never really thought about it until reading a thread about the bi-pap adjustments and I don know, before they always wrote a rx for adjustments. Thanks again for all the help. I truly respect each and every one of yall.
Annette
 

JACKIEMAX

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Rilutex

My Husband Has Been On Rilutex For Over A Year, And We Have No Proof That It Helps Or Does Nothing. His Breathing Is Labored Even On 4 Leders Of Oxygen, And He Uses His Bi-pap More Often Now.

His Breathing Was 55% On His Last Test. I Think Most Als Patients Take Rilutex Bec. It Is Said To Help Them Live A Few Months Longer, But I Doubt If We'll Ever Really Know For Sure.

Jackiemax
 

Icanmanz

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I agree with you Jackie, we'll never, ever really know for sure. The same goes for a cure, will there ever be one? My son was on Rilutek, and there was "no proof" that it helped.

Irma
 

hopingforthebest

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Rilutek

Hi all

My husband was just prescribed Rilutek (recently given PMA diagnosed) but he has had an awful cold, me too, so we are waiting until he is over the cold.

We were told it is the only FDA approved medication for ALS. It is a twice a day dose and to be taken on empty stomach.

We are blessed to have an RX plan but questioned the cost if we had to pay. For three month supply #190, it would run around $3,375.

We were blown away by that.

Our hope is that is will work to slow down the progression of the disease. Time will tell.

Patty
 

Al

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Rilutek is like taking a multi vitamin. Do you ever really know if they work? There is new evidence that it can help to prolong life up to a year. I take it. Some do some don't. There should be a lot of opinions if you search it here.
AL.
 
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