Status
Not open for further replies.
the va would provide rilutek to me at no cost. have never taken it as i refuse to stick the va for this unproven, over priced joke called medicine
 
the va would provide rilutek to me at no cost. have never taken it as i refuse to stick the va for this unproven, over priced joke called medicine

That's what some other PALS who attend to our PALS/CALS monthly meetings (sponsored by our local ALSA) call Rilutek, "joke drug". LOL


NH
 
the va would provide rilutek to me at no cost. have never taken it as i refuse to stick the va for this unproven, over priced joke called medicine

I also get them at no cost... I took them for a few months but they made me feel weaker and started do add a yellow tinge to my skin and eyes which to me meant my liver was not processing it correctly..
 
I don't take this drug but for those that do, a generic version is just now being shipped so ck with your pharmacists in coming weeks/months...

Aceto to launch generic for ALS treatment

Aceto Corporation, Port Washington, N.Y., announced June 11 that its generics subsidiary, Rising Pharmaceuticals Inc., Paramus, N.J., will launch the 50-mg strength of riluzole tablets.

Riluzole is used to treat amyotrophic lateral sclerosis (ALS) and in 2012 generated $64 million in sales, according to IMS Health. Aceto’s product is an FDA-approved version of Covis Pharma's (Switzerland) Rilutek. Rising Pharmaceuticals has launched nine generic products in 2013.
 
I don't take this drug but for those that do, a generic version is just now being shipped so ck with your pharmacists in coming weeks/months...

From What I've seen the "Generic" version will cost even more than the original..

Once again everyone... I suggest you search down all the info about the clinical testing results and side effects before consuming this drug.. I ALWAYS research every drug that gets prescribed to me before I decide to take it..
 
I just got my new insurance card the other day & went to refill my 90 day prescription. I about fell out of my wheelchair when the druggist told me that my insurance would no longer cover the Rilutek and that it would cost me $6000 plus change for my 90 day supply. I politely declined. She told me that the max my insurance would cover for a generic is $1500. A call when I got home to the insurance people did give me some hope that they may cover it, they want some further info from my Dr. I hope that they can get it sorted out.

I'm not really sold on the drug but I have been on it for 2 years now with no side effects (besides lightning my wallet) and have so far had a slow progression. Don't know if it is because of the medicine or not, but I'd hate to give it up and then find that it was helping me.
 
I think I picked up two months worth (still have about half a months worth in the bottle)... Over the five+ years since diag. I can't understand how they chose the participants in their trials due to the differences between the progression rate of each case with or without intervention.. I am still walking (very short distances) and even driving on occasion (to the corner store).. I have trouble with stairs.. And once again do NOT take the mega-buck drug (that my plan fully pays for) Hoping some day they will find a drug/treatment that will stop and reverse the affect of this evil decease.. But until I see absolute PROOF I'll pass..
 
$6,000 plus change for just a 90-day supply for a terminally ill patient?

This is...INSANE!

Drug companies are run by heartless people. And...there are people who support them (even here).


Carlos
 
Carlos, the "heartless" people who run drug companies have helped eradicate numerous diseases from smallpox to polio, allowed people with chronic conditions such as diabetes and heart disease to know their grandchildren (and more often keep all their limbs) and saved trauma victims from needless death, among many other accomplishments. Here at the ALS forum, people are dying and deserve better than polemic, for which thousands of political forums exist.

So are you telling us you have never taken a prescription drug, because the industry is unworthy of your support? I daresay at the least you received childhood immunizations and seem to recall you have mentioned other rx.

And yes, I'm proud of my time in pharma, where I helped advance new options for CNS disorders, including ALS. I don't think rx will be the complete answer in ALS any more than it has been in other chronic conditions, most of which require other modalities as well. But ALS drug development is hardly resource-rich and so the fatalism you profess seems all the more counterproductive.

Contrary to your implication, I don't know anyone who 100% supports everything pharma does, nor the oil companies, nor any other industry. But I support anyone who is trying to make a positive difference in an ethical, evidence-based way. You might try that line of thinking and see how far it takes you.
 
@lgelb:

You are a kind of controversial person.

Whenever I have posted something on a thread and you also happen to post on that particular thread it's just to rip me because of what I posted.

You are also the kind of person who thinks that "Knows-It-All" just because you worked (or still work) for the health-care industry. All this makes you arrogant and delusional.

Let me recap some incidents here on these Forums where you've tried to override or overrule posts that I've made.

Firstly, you accused me of "spreading misinformation" about Social Security benefits for people with ALS.
This accusation turned out to be false and other Forum members jumped in on that thread to deny your accusation that I had been "lying and you had been correcting me every time".


Secondly, it was the thread about the not getting the PEG-tube and "dying peacefully".
You claimed you are "100% sure" that some people do "die peacefully".
I was going to respond you on that thread with an argument that was going to be very hard for you to rebuke but, there are some people here who were going to find that post somewhat "disturbing" and thus, I refrained from posting it.
I was going to send it to you as a PM but you either purposely disabled PM or the Forum Admin disabled it for you.
If you are able to make it work, let me know and I'll PM you the reasons (biochemically and chemically) because why I think no human being dies "peacefully".
That's something you can't claim for certain as you haven't died and come back from the dead to tell us. So, do not assume just because what you see and may think.


Thirdly, this thread about Rilutek and its scandalous price scheme.
Just to oppose me, you made that post.

lgelb: I don't know who you are and I could care less either but, just to let you know, I am a CHEMIST. Yeah, a Chemist with a B.S. and an M.S. in Chemistry.

I have worked for the *Pharmaceutical Industry as long as you have or maybe longer than you.

I have worked for Sanofi-Aventis, Pfizer, Eli Lilly, Abbott Labs, Allergan, J&J and Novartis.

I have worked on Quality Control Lab analyzing Raw Materials, In-Process, Finished Products, Stability. I have worked on Quality Assurance. I have worked on Compliance. I have worked on R&D. I have worked on Regulatory Affairs.

I have dealt with the FDA whenever they had come over to our facilities to conduct an inspection/audit.
I have addressed FDA "Warning Letters" (also know as "483") and corrected any deficiency that ma have popped-up during the inspections.
I'm familiar with GMPs, GLPs, CFR, etc (I suppose you should know what these acronyms mean, right?).

So, to let you know, I know as much as you claim to know about the Drug Industry (for whom I have worked all my life before this DAMN ALS struck me).

Even when having been an employee for them all these years and having *401K and the like, I still think they are HEARTLESS people.

Why do I say it?
Because I've been to the QC LAB and R&D and I know how much they spend to manufacture a drug and how much the charge for it just to please their STOCKHOLDERS and the Pension Plans.

One of these companies, spent about an average of $87 to manufacture a drug (Material Purchase, Manufacturing, QC Analysis, QA Compliance, Stability, etc.) and they charged $900! for every drug bottle they sold and this drug was for treating Cancer!

JesusChrist!
Do you "lgelb" think these guys are not "heartless"? In what world you live in?

What about the poor people who don't have the luxury of living in the USA such as those who live in Africa, Asia, Latin America?

Even people who live here in the USA and do NOT have Health Care to see a Doctor, let alone buying a Prescription? What about them? Who speaks for them, on their behalf? YOU, lgelb?

You seem to be living on a "Fantasy Land" while other people struggle to survive on daily basis.



My advice to you would be: "Wake up and smell the coffee"...




Carlos
 
I have a long list of friends, including my very best friend, who are HIV+... and ALIVE. There are good things happening out there. That nothing has really been accomplished with ALS says more to me about the elusiveness and complexity of the disease than about the evil and heartlessness of "everyone" in the industry.
 
I take two heart meds. (that are under $30 each) that I know work well because if I forget to take them my body reminds me.. I would just like to see proof that Rilutek has any benefit to ALS sufferers.. The clinical studies seemed a little mystifying to me. Results say.. MAY add months to ones life.. While also saying is likely to cause elevated liver stress in most people (certainly did in my case).. Is a drug that MAY do something worth the risk and the $2000/month for generic version? I seem to re-call my Sanofi script being just over $400/month..
 
Just went to pick up the Rizoule generic at CVS. Cost was almost exactly the same as Rilutek :(
 
The joke about riluzole (brand or generic) is not whether it works or not. It is the price, which doubled essentially when the the drug was purchased by Covis. The ludicrous situation is that the generic and brand versions are presently only $200 apart (on a $2,000+/month supply). I think it is a matter of price fixing. Everyone should be furious about this.

Many people don't take the drug. Some cannot safely take it. Others think it may not work. Many think it is not worth the cost.

My husband and I have never encountered a neuromuscular specialist who discouraged its use. They prescribed and insisted on its use (when my husband initially demurred, thinking it would only extend his life 3 months). Different ALS populations were represented in the earliest trials for Rilutek. It is likely more efficacious for some patients than others. The point here is: use of the only drug available for ALS should not be inhibited by price!

My husband was formally diagnosed in March 2010. His liver is fine; his progression is slow. Many of our decisions now are guided by prudence and logistics rather than rapidly cascading symptoms. We have to give some of the credit to Rilutek.

We are fortunate that we can continue to pay for the drug. We will continue to do so while we wait for the next better thing. In the meantime, I feel nothing but contempt for the pharmaceutical companies playing their games on the backs of desperate families.

V
 
Today's mainstream Medical Research and Doctors want your money just as much as anyone else. Do you think they really want a find a cure? Not a chance!


Do you know how much money would be lost if they cured Cancer? It will NEVER be cured because it's an enormous industry that is generating enormous amounts of dollars for all the "Research Scientists" and "Doctors" involved.

ALS is no different. The only thing that is ever going to happen within the mainstream medical system is that they are going to come up with some sort of "drug" which will cost thousands and thousands ($$$) of dollars and all the ALS patients will need to take it, and it won't make one bit of difference.
Just like RILUTEK.

Anyone who is diagnosed with a functional disease needs to get off this train to nowhere. We really need to take this into our own hands and forget about Western Medicine altogether.
I think the ONLY cure is going to be found outside of this mainstream, universally accepted "Medical Research".


The Big Drug Industry is despicable and the medical professionals they have in their back pockets are just as bad.

-------------------------------



Carlos
 
Status
Not open for further replies.
Back
Top