Need info on Rilutek use 2 plus years

[JustMe]

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]

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]

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

[JustMe]

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]

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]

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.

[ZenArcher]

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]

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]

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]

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

[freddiesnetty]

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]

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]

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]

Hi all

My husband was just prescribed Rilutek (recently given PMA dx) 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]

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.

[paula-jane]

My mum was given Rilutek in March 07 after her diagnosis. Her first symptoms were Oct. 06. Our understanding at time was that it might extend her life 3 months for every year she lived. She takes Rilutek 2 hours after food (so, in fact on an empty stomach) and at least one hour before her next meal. We have NO clue if this drug is doing any good at all. My mum believes and therefore she receives. To the best of our knowledge it has made no difference at all... then again... she is still alive.

[JustMe]

The biggest problems with Rilutek are the Price and the fact that most insurqance ( in PA at least ) will no longer pay for it. I can simply NOT aford it if it has to come out of my very depleted bank account.

What I can't understand is WHY the ALS Society hasn't done anything to help us get the meds. Rilutek is the ONLY medication for ALS, but the ALS Society can'can't do anything to help us get it.

JustMe

[ZenArcher]

Both NORD and Medicare will pay for Rilutek. If you are a veteran the VA can supply Rilutek at $24 for 3 months. If you get category 4 with the VA its free. My insurance which is Idependence Blue Cross out of Philadelphia covers Rilutek. I also read somewhere about the Caremark program through CVS but can't remember the details on that one.

[jakk]

Hi- My mother in law was diagnosed 2 years ago and I'm sad to say that she could probably go anyday now. I personally think you could give an ALS patient a cough drop and it would be as helpful as Rilutek. It has never helped and is very expensive. I think it is a scam to get money from people who will do anything to give extra time to their loved one. Just my opinion though. My thoughts are with you. What a horrible disease!!

[jakk]

FYI- She is still taking rilutek...

[Al]

Hi jakk. Sorry about your mother in law. The thing with Rilutek is that you DON'T know if it IS working. It's not like a medicine for a rash that goes away when the med works. How do you know your mother in law wouldn't have passed away a year ago without the Rilutek? A lot of patients last less than a year and some took Rilutek, some didn't. Some like me take Rilutek and last 4 years and longer.
AL.

[jakk]

You are right- I don't know. You sound like my husband. But they told her she had 2 years and that seems to be exactly how long she'll make it. I think I've just been a little bitter about rilutek all along because it costs so much money...If it's why you have been allowed to live for 4 years-then Praise God!

[JustMe]

I have to agree about Rilutek being a money-making item, but from here it looks like much more of what passes for ALS care is the same. I am in Central Penn. and when I started taking Rilutek 2 1/2 years ago my local Capital Blue Cros covered it. Last year they dropped it from the formulary and I had to search all 70 or so of the Part D Medicare providers to find the ONE who still coveed it - and incidentlly didn't have a :donut hole"

Now this year they also dropped Rilutek, and the "donut hole" is back. So what to do ??? NORD does not supply anything for ALS - just an application for Aventis' support program. Aventis wants COMPLETE details of your finances - everything - with photocopies. Even if I could physically make and send all those copies, I refuse to give them my complete financial profile. That is just unacceptably intrusive.

As for State agencies, limited help is available IF you are solidly into the poverty line - if you have any resources at all to try to keep from going under you don't quallify, The indirect advice I have gotten is to sell our house and belongings and move into a cherity apartment, Cash in my life insurance policy and any savings or investmenta (no matter how limited) and then help will be available - because we qualify?

Of course, when I die my wife is left totally destitute and penniless.

I will NOT do that - so when I can no longer qalk or eat, or bath or use a toilet - then what? My wife has to take on a 24-7 support job? When does she sleep, eat, shop or even sit down and relax?

There is something very wrong with this picture.

JistMe

[ZenArcher]

Got this in my advocacy email today from the ALS Association

Rilutek Coverage (http://www.capwiz.com/alsa/attachments/1_Rilutek_and_Costs.pdf)

Choosing a Prescription Drug Plan (http://www.capwiz.com/alsa/attachments/Choosing_a_Prescription_Drug_Plan.pdf)

Extra Help Is Available (http://www.capwiz.com/alsa/attachments/Extra_Help_is_Available.pdf)

Frequently Asked Questions (http://www.capwiz.com/alsa/attachments/1_FAQs.pdf)

Information to Have and Questions to Ask (http://www.capwiz.com/alsa/attachments/Information_to_Have_and_Questions_to_Ask .pdf)

Report Problems and Successes (http://www.capwiz.com/alsa/attachments/Report_Problems_and_Successes.pdf)


Entire 2008 Medicare Drug Benefit Document (Includes all of the above) (http://www.capwiz.com/alsa/attachments/1_2008_Medicare_Drug_Benefit_Open_Enroll ment.pdf)

[judylyne]

My husband started on rilutek today. Has anyone had any side effects from it? The doctor is worried about his breathing and the fact that he lost 14 lbs. He was the 1st patient in the new als clinic that opened yesterday

[ZenArcher]

I had elevated liver enzymes. They took me off for a month and have just started me back at 50 mg once per day to see what happens. Going for blood work every two weeks right now.

[hopingforthebest]

Well, have no idea if it is truly the Rilutek, but my husband started meds this week
he takes on an empty stomach 5:30 a.m. and 5:30 p.m. Does not eat for one hour
after taking the dosage of 50mg., and he swears his leg cramping has gone away.

I just pray that it slows the progression to just where it is now and no worse.
Hope you all had a wonderful Thanksgiving day and I am so thankful for this site and you dear saints going through this awful disease and you saints caring for our loved ones.

May we all give thanks to God for another day together with our family, friends & four legged friends!

God Bless you,
Patty:-D

[JustMe]

Thank you ZenArcher for that information. For some reason I never got it - just made certain I was re3gistered with ALSA.

Now all I have to do is find a Medicare Part "D" insurance company who carries Rilutek on the formulary -- only one so far is SilverScripts... My old carrier Capital Blue does not.

Thanks again,

JustMe

[ZenArcher]

Not a problem, glad I could help. Good luck on the search.

[ZenArcher]

I know nothing about nor am I affiliated with this company in any way. They are listed on the American Legion benefits so I figure someone has researched them. They say they cover all drugs listed in the Medicare formulary and have additional drugs on the premium program.


http://www.unitedhealthrx.com/

[Dr. Ashley Pereira]

Hi Paula:
How is your mum doing? How old is your mum. I read she was diagnosed in Oct 2006 and was given RILUTEK in March 2007.
ashley

[DBowman]

Rilutek takes about 6 to 18 months of ingestion before it actually starts to "kick in". That's one reason a neurologist won't say much about it to an ALSer about its effectiveness. Time is of the essence to an ALSer. It is supposed to SLOW down the progression although it can be as little as 3 months but every little bit helps. They don't know HOW it even works...they only know that it does. It is so expensive because they do not make a LOT of it. Have you noticed that if it disolves on your tongue before you swallow it, it will make your tongue numb? Is it some kind of anesthetic? I have PLS and I know another PLSer who's had the disease for 17 years and she has never taken Rilutek. I don't like the fact that you must have your liver enzymes checked and I don't know what it will do to the liver on a long term basis. I also don't like that it makes me SO tired, either. If it is beyond your control that you cannot afford to take it any more due to insurance I believe being sad and distressed about something you cannot DO anything about will be way more detremental to your health and quality of living. That's when you need to tell God you're giving the situation completely over to Him because your life is in His hands anyway.

DBowman

P.S. If you have any questions about what kinds of liquids you can take with your Rilutek ask the pharmacist who gets it for you...He can tell you.

[Montana Carol]

I've not taken Rilutek yet. I figured the high cost wasn't justified if it only lengthened one's life by a few months, AND it had possible side effects. But now since I've heard about the lithium-plus-Rilutek trial, I'm again checking to see if I can get Rilutek at anything approaching a reasonable price.

The Humana phone contact told me that my portion of the $800+ monthly cost would be 25% or $212 purchased from their Rite Source preferred provider. Rilutek is on their list of Specialty Drugs. There is a donut hole, too, so I guess I'd reach that after only 3 months, thinking it's based on the total cost. I'm not willing to pay $800 a month out of our limited savings, so I think I'm out of luck.

Canada Pharmacy online shows a price of $662 for a month's supply, but I think I'd have to get a 3-mo supply per order, and I rather doubt Humana would pay 75%.

[Al]

Do some searching on the site. There are options available.
AL

[dona jean]

i agree with al...i have been on rilutek since october, and my legs have gotten worse, but i still take it until something else comes down the pike that is better. we don't have a choice of meds, so we have to hope that what is available to us can help, but taking
rilutek is just like taking anything else, it will help some and on help others, just depends on how our bodies accept the drug.
we have to remember wit ALS it is what it is, and we have to deal with it as best we can cause those are the cards dealt to us.
keep the chins up!!!