Rilutek Discussion: Cost, Effectiveness and Availability

[John1]

RC,

Do know how long before eating one is to take it? I usually gobble them down a few minutes before a meal. I've been doing this for 4+ years!

John

Edit. I've just googled it and found this. Glad you posted, I'll be changing my ingestion times.

DOSAGE AND ADMINISTRATION
The recommended dose for RILUTEK is 50 mg every 12 hours. No increased benefit can be expected from higher daily doses, but adverse events are increased.

RILUTEK tablets should be taken at least an hour before, or two hours after, a meal to avoid a food-related decrease in bioavailability.

 

[ladave]

RC-

Your post summarized many of my feelings about ALS generally and rilutek in particular. With such a variable disease, it is hard to know whether any given treatment is "working". Consider this hypothetical- person starts taking treatment "x", within two weeks his arm strength improves somewhat. Is it the treatment, or were denervated muscles "reinnervated" through normal disease process?

Rilutek is even harder to judge because even if it works, you don't get "better", you just get worse more slowly.

Myself, I tend to think it must confer some benefit because every study seems to so indicate. What benefit, I cannot know for sure. I'm on it about three weeks now and have noticed no change in my rate of progression- ALSFRS and ALSFRS-R scores constant, fasciculations slightly worse (noticeable in right calf and right cheek). Three weeks, though, is not much of a test, and I too must be more careful to take on an empty stomach.

 

[Granny]

I find taking Rilutek on and empty stomach is a pain....but I take it at 10 am and 10 pm or as close to those times as I can. Most of my food is tube fed, or puddings, or shakes so I just work around those. I have been taking Rilutek for a year and a half, and does it work? Who knows. I have Bulbar ALS, was diagnosed in April 04. That is two years ago, and if the survival rate of bulbar patients is 12 to 18 months, I have outlived the norm...yahoo. My age also works against me...I am not a spring chicken, so I feel I am blessed to be doing this well. Prayer, and friends and a positive outlook, and humour (which I learned here) and maybe Rilutek, who knows what part the drug plays.

 

[marlo]

Marlo-

I find it interesting that your neuros are making judgements about medication based on cost. To me that's what's wrong with our medical system. In my case I'm lucky, my insurance covers it except for a $20 copay per month, so my doctors and I are able to make a medical judgement unencumbered by cost-benefit issues. But that's not the point.

A treatment should be undertaken based on the benefit it provides as weighed against the side effects. Period. Based on this, some may choose not to take Rilutek, but it would be a medical decision, not an economic decision. (Yes I know I'm dreaming, but I couldn't help commenting.)

Hello Dave,
I agree with you that the doctors sometimes make decisions for the wrong reasons and we are the ones to pay the price. However,, All i can tell you about my neuros is that they dont' like each other too much and yet they both said the same thing to me at two different appointments so they didnt' know what the other one had said. I got the feeling,, for them it wasn't so much about the cost as it was the fact that it only gives a person an added 3 months or so. They didn't say that was per year or anything,, just 3 months. We all have to do what we have to do ,, but for me,, i can't afford it. I figure when the good Lord is ready to take me home,, i'll go and not a day before,, regretless of what medicine i'm on. If he wants me that bad,, it won't matter if i'm on Rilutek or not,, he'd just crash my car or something. You see,, i believe HE is in charge ,, not me.

Marlo

 

[ladave]

Marlo-

I understand your circumstances and would always fully support any decision made by any PALS with regard to their treatment. My comment was more to the general principle of money playing a role in medical decisions, which I think stinks. Medical decisions should be made for medical reasons, period.

Now, as to the rest of what you said- each of us has our own beliefs about the sacred (and the profane for that matter). As for myself, I've always put great stock in that old saying, "The Lord helps those who help themselves". I believe God no more wants PALS to die than S/He wants Saddam Hussein to live. More basically, I believe we were created with free will and that our choices are our own to make. That God may already know the outcome changes things not one bit for us down here on Earth. So I will use the intellect God gave me to make the best choices I can and to maximize what time I'm given.

 

[grp_believes_in_God]

Hi Marlo, Thanks for your kind sympathy. I will pray for you and other PALS while I pray for my dad. My dad saw another neuro yesterday who said rilutek was waste of money and not of much use. THe first neuro did prescribe it so I guess every doc has different opinion.
I appreciate the discussion on this thread. Every opinion has its merits and its good to know different perspectives. Ultimately its an individual decision whether to take rilutek. Certainly financial situation will play a part. Right now I think I can afford RIlutek (it costs about $500/month in India). If it cost $50 we wouldn't be having this discussion. I don't know why it takes that much to make a tiny little pill.
I want my dad to live long enough so I will provide him with all financial assistance I can give. I think I can afford $500/month. It's not going to make any difference in my standard of living. It will however give me some peace of mind.
So unless there is a medical reason (like side effects) I will urge dad to take this pill.
Everytime I read a post that says bulbar pals have shorter life it breaks my heart but when I read a posts that says people lived many years it cheers me up. I am willing to cling to any piece of hope I can see. Certainly rilutek gives me some hope.

 

[shackney]

GRP,

For the record, I think the common sentiment that Bulbar ALS is "worse" than limb onset or that the prognosis is shorter is based on complications that arise from speaking/swallowing difficulties, not disease progression. I am not a neurologist or even a doctor (I am, ahem, a lawyer), but my internet research leads me to conclude that Bulbar ALS may actually have a slower disease progress than limb onset. This is so because the Bulbar symptoms often remain localized in the Bulbar region of the brain before spreading to the limbs. Once they spread to the limbs, disease progression is consistent with limb onset. Logically that leads me to conclude that there is a longer disease path in Bulbar.

The problem is in the complications -- I think many pALS resist feeding tubes and may encounter depression as a result of losing an "essential" function -- meaning one as deeply personal -- as speech. As a result, the nutritional difficulties and attending depression may put Bulbar pALS behind the eight ball. These problems can be readily addressed, however, with PEG tubes and AAC solutions. Thus, though there is some truth to the notion that Bulbar ALS is "worse" than limb onset -- I do not accept the notion that it is faster when viewed purely in the context of disease progression.

My Dad has Bulbar ALS and this is the reason both for my defensiveness as well as for my attempts to get to the bottom of the "Bulbar is faster" theory. Good luck with your Dad.

 

[marlo]

Hello Dave and GRP,

Sounds like we are pretty much in agreement about this disease. I do believe that we should do all we can to stay alive. And if you can afford to take a costly drug ,, and it's something you want to do ,, i think you should go for it. However, in my situation,, i can't afford it,, and as GRP , said, " it does appear that the doctors are still in debate over the drug", so who knows if it helps or not. Sometimes we fool ourselves into thinking something makes us feel better even if it doesn't. How else can you explain those tests done on people where half get a sugar pill and the rest get the real drug. In several cases the people given the sugar pill calmed to get better. I think it's simply mind over matter. In anycase ,, we were born as you say with a "free will" so the choice is ours to make. But i think if I was meant to take expensive drugs ,,, God,,, would also be a big enough God to provide the means in which to do so. When he does that then i will have to make another decision. Until then my hands are tied. I am glad some of you are able to have that choice. I'm at peace with it until the situation changes.
As for the Bulbar ALS,, being faster in breaking down the body. I think i would have to agree with Shackney. I have Bulbar myself,, and know of two other people in my town that have just been diagnosed with Limb ALS. So far they are going down hill faster than i am. And i no at least one of them is on the expensive drugs. However, i guess that doesn't really mean anything. Since the verdict is still out on that one. I just think it's more of an individual thing,, and no matter what we do,, it will break down as fast or as slow as our Maker allows.
Hope you all have a good.
Love and Prayers
Marlo

 

[MtPockets]

Marlo I agree with you completely. I had just started a new thread when I found this one on the search icon. I now am not as upset as I was when I posted this on the other thread.
Thanks for reminding who is really in control.
God Bless
Capt AL

I have been disabled for over 18 years due to nerve damage and chronic low back pain in my lower back. I have always been able to get the medicines I needed for this through my workers compensation coverage out of Alaska, where I was originally injured. I now live in Gulfport Mississippi where I had returned to see my back surgeon after the injury. So for all these years I have not had to pay for any of my back related medicines and treatments.

Last week I needed 5 prescriptions paid for by my workers comp worker and they were all turned down. The reason was the treating physican who has been seeing me for years had put the diagnosis right on each prescription as DX/ALS. After the prescriptions were rejected I talked with the doctors office several times and they said every visit I have had since I was DX with ALS May 11, 2006 has been written up as an ALS visit. Even though 90% of them were not ALS visits. They are apparently totally ignoring 18 years of back pain and nerve damage treatment.

So now workers compensation will not pay for any of the prescriptions. I have tried to get in to see the doctor and explain that 4 out of 5 of the prescriptions were back injury related and not ALS related, but he refused to see me again saying I needed to go to see a second neurologist for a another opinion?

I cannot afford the Rilutek and have no way to pay for it at this time. Does anyone know of a source that can help, such as a drug company or something?

This just about threw me off the edge when they told me this. My back pain has been getting worse all the time due to additional effects of the ALS, losing my legs etc. With the added stress of this it was just too much for me handle at one time.

My pain management doc has me scheduled for some back injections today to try to get some relief from the back pain, and he will bill workers Compensation without any problems. But this other Doctor is my family doctor for years, and he does not want to even discuss the issue and workers compensation will not let me change doctors again. This is sooooo frustrating.

Sorry to be so down, but this is a bummer. Any suggestions?

God Bless
Capt AL

 

[Meg1]

Just a couple of points:

There was a British study of long-term ALS survivors published a couple of years ago that determined that, contrary to popular belief, bulbar ALS suffers are as likely as limb-onset patients to survive for more than ten years. IIRC, among PALS who have lived with the disease for the longest, aproximately 30% are bulbar-onset patients which is almost exactly the incidence of bulbar onset among all PALS. It seems that there's almost a reverse bell curve tracing years-til-death for bulbar PALS. A greater number of them die early, but fewer die in the average (three-to-five year) period.

As for economics and medications, OF COURSE price does and should be considered in the drug-taking decision-making process (feeling like Jesse Jackson here). Economics have to be part of the cost/benefit equation in the real world because dollars are a scarce commodity, whether they're being shelled out by an individual or an insurance company. Would you pop a Tylenol every time you had a muscle ache if they cost $100 each? Of course not. We always have to weigh the potential benefits from anything (food, clothing, drugs) against their costs which always include the monetary costs. It's only when the benefit approaches life versus death (definitely not the case with Rilutek, IMO) that monetary cost ceases to be an important consideration.

And that's your economics lesson for today.

 

[MtPockets]

Just a word of caution to some who might consider purchasing drugs overseas or over the internet, there is a very large business in counterfeiting drugs in other countries. Yes, you may find Rilutek or some other drug somewhere very cheap, but are you really getting that drug?

I myself have decided it's not worth the cost to take Rilutek anymore. I have been on it for about 8 months, and have noticed no difference in my progression. Just my personal choice.

God Bless
Capt AL