Old 11-09-2007, 02:21 PM #1 (permalink)
New Member
 
Join Date: 2006
City: Harrisburg
State: Pennsylvania
Country: US
Interest: I have been diagnosed with ALS.
Posts: 35
JustMe is on a distinguished road
JustMe JustMe is offline
New Member
Join Date: 2006
City: Harrisburg
State: Pennsylvania
Country: US
Interest: I have been diagnosed with ALS.
Posts: 35
JustMe is on a distinguished road
Default Need info on Rilutek use 2 plus years

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
JustMe is offline  
Old 11-09-2007, 03:18 PM #2 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
Default

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.
Al is offline  
Old 11-09-2007, 03:49 PM #3 (permalink)
ZenArcher's Avatar
Senior Member
 
Join Date: 2007
City: McEwensville
State: PA
Country: US
Diagnosed: 02/2007
Interest: I have been diagnosed with ALS.
Posts: 674
ZenArcher is on a distinguished road
ZenArcher ZenArcher is offline
Senior Member
ZenArcher's Avatar
Join Date: 2007
City: McEwensville
State: PA
Country: US
Diagnosed: 02/2007
Interest: I have been diagnosed with ALS.
Posts: 674
ZenArcher is on a distinguished road
Default

I haven't been able to find any studies past the 18 month point. Do you go to the Hershey clinic?
ZenArcher is offline  
Old 11-09-2007, 04:05 PM #4 (permalink)
New Member
 
Join Date: 2006
City: Harrisburg
State: Pennsylvania
Country: US
Interest: I have been diagnosed with ALS.
Posts: 35
JustMe is on a distinguished road
JustMe JustMe is offline
New Member
Join Date: 2006
City: Harrisburg
State: Pennsylvania
Country: US
Interest: I have been diagnosed with ALS.
Posts: 35
JustMe is on a distinguished road
Default 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
JustMe is offline  
Old 11-09-2007, 04:33 PM #5 (permalink)
New Member
 
Join Date: 2006
City: naples
State: florida
Country: US
Interest: I have been diagnosed with ALS.
Posts: 55
Brentt is on a distinguished road
Brentt Brentt is offline
New Member
Join Date: 2006
City: naples
State: florida
Country: US
Interest: I have been diagnosed with ALS.
Posts: 55
Brentt is on a distinguished road
Default

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.
Brentt is offline  
Old 11-09-2007, 07:02 PM #6 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
Default

https://www.pparx.org/Intro.php

Here is another link. Don't know if it is the same deal as NORD. Doesn't cost anything to ask. Or it shouldn't.
AL.
Al is offline  
Old 11-09-2007, 10:33 PM #7 (permalink)
ZenArcher's Avatar
Senior Member
 
Join Date: 2007
City: McEwensville
State: PA
Country: US
Diagnosed: 02/2007
Interest: I have been diagnosed with ALS.
Posts: 674
ZenArcher is on a distinguished road
ZenArcher ZenArcher is offline
Senior Member
ZenArcher's Avatar
Join Date: 2007
City: McEwensville
State: PA
Country: US
Diagnosed: 02/2007
Interest: I have been diagnosed with ALS.
Posts: 674
ZenArcher is on a distinguished road
Default

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.
ZenArcher is offline  
Old 11-11-2007, 06:50 PM #8 (permalink)
New Member (Say Hi)
 
Join Date: 2007
City: London
State: England
Country: UK
Interest: I lost a loved one to ALS/MND.
Posts: 2
jaelke is on a distinguished road
jaelke jaelke is offline
New Member (Say Hi)
Join Date: 2007
City: London
State: England
Country: UK
Interest: I lost a loved one to ALS/MND.
Posts: 2
jaelke is on a distinguished road
Default 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.
jaelke is offline  
Old 11-11-2007, 06:57 PM #9 (permalink)
Moderator
Forum Moderator
 
Join Date: 2006
City: Anytown
State: New England
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 3,564
CindyM is on a distinguished road
CindyM CindyM is offline
Moderator
Forum Moderator

Join Date: 2006
City: Anytown
State: New England
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 3,564
CindyM is on a distinguished road
Default

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
CindyM is offline  
Old 11-13-2007, 11:37 AM #10 (permalink)
Saubier's Avatar
New Member
 
Join Date: 2007
City: Colora
State: MD
Country: US
Interest: I have been diagnosed with ALS.
Posts: 67
Saubier is on a distinguished road
Saubier Saubier is offline
New Member
Saubier's Avatar
Join Date: 2007
City: Colora
State: MD
Country: US
Interest: I have been diagnosed with ALS.
Posts: 67
Saubier is on a distinguished road
Default

Rilutek is supposed to be taken on an empty stomach. Anybody know how important that is?
Saubier is offline  
Old 11-13-2007, 09:26 PM #11 (permalink)
freddiesnetty's Avatar
Member
 
Join Date: 2007
City: Houston
State: Tx
Country: US
Diagnosed: 12/2006
Interest: Sole caretaker for husband with ALS
Posts: 239
freddiesnetty is on a distinguished road
freddiesnetty freddiesnetty is offline
Member
freddiesnetty's Avatar
Join Date: 2007
City: Houston
State: Tx
Country: US
Diagnosed: 12/2006
Interest: Sole caretaker for husband with ALS
Posts: 239
freddiesnetty is on a distinguished road
Default

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
freddiesnetty is offline  
Old 11-13-2007, 11:25 PM #12 (permalink)
Member
 
Join Date: 2007
City: Baxter
State: TN
Country: US
Interest: this disease has turned my world upside down.
Posts: 159
JACKIEMAX is on a distinguished road
JACKIEMAX JACKIEMAX is offline
Member
Join Date: 2007
City: Baxter
State: TN
Country: US
Interest: this disease has turned my world upside down.
Posts: 159
JACKIEMAX is on a distinguished road
Default 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
JACKIEMAX is offline  
Old 11-13-2007, 11:51 PM #13 (permalink)
Senior Member
 
Join Date: 2007
City: Tomball
State: Texas
Country: Uni
Interest: I have been diagnosed with ALS.
Posts: 949
Icanmanz is on a distinguished road
Icanmanz Icanmanz is offline
Senior Member
Join Date: 2007
City: Tomball
State: Texas
Country: Uni
Interest: I have been diagnosed with ALS.
Posts: 949
Icanmanz is on a distinguished road
Default

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
Icanmanz is offline  
Old 11-14-2007, 11:01 PM #14 (permalink)
Member
 
Join Date: 2007
City: Mays Landing
State: NJ
Country: US
Diagnosed: 02/2007
Interest: He is home with Jesus 6/22/09
Posts: 355
hopingforthebest is on a distinguished road
hopingforthebest hopingforthebest is offline
Member
Join Date: 2007
City: Mays Landing
State: NJ
Country: US
Diagnosed: 02/2007
Interest: He is home with Jesus 6/22/09
Posts: 355
hopingforthebest is on a distinguished road
Default 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
hopingforthebest is offline  
Old 11-16-2007, 11:04 PM #15 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
Default

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.
Al is offline  
Closed Thread

Tags
back, info, information, insurance, medicare, meds, pennsylvania, rilutek


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
I have been diagnosed with ALS for 2.5 years and I am 73 years old PetacALS General Discussion About ALS/MND 7 08-26-2014 06:02 PM
Rilutek Janie H General Discussions About PBP 2 07-19-2013 04:38 PM
Asking for help - Rilutek LNKa General Discussion About ALS/MND 9 07-03-2012 04:55 PM
Rilutek chrisroski People With ALS - "PALS" 11 04-28-2012 07:33 PM
Rilutek mikeb1 General Discussion About ALS/MND 28 12-12-2011 09:55 PM
Rilutek joni51 Used ALS Equipment for Sale! 1 09-19-2011 09:42 PM
Rilutek**Do you take it? Blubear General Discussion About ALS/MND 18 12-14-2009 03:04 PM
Rilutek ruby ben People With ALS - "PALS" 46 01-10-2009 04:28 AM
Rilutek cajuntexusa General Discussion About ALS/MND 0 04-29-2008 07:45 PM
Rilutek Lisa Lane People With ALS - "PALS" 11 08-28-2006 12:41 AM


All times are GMT -5. The time now is 06:27 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016