Pros and cons of Rilutek

[Gracie]

My husband's neuro prescribed Rilutek at a wooping cost of 1,069.99 a month retail from our pharmacy. We do have insurance however we only have a cap of 2800.00 yrly, the total cost will be ours in 2 months plus the cost of all the other meds such as Baclofen and pain meds. In my research I found info suggesting studies have shown on an additional 2 to 3 months survival rate apposed to not taking the drug. I would appreciate some info from the people who really know. Thanks

 

[indigosd]

Gracie, if you type Rilutek in the search box you will find a lot of information concerning the pros and cons. We tried it but it made him horrible ill after 2 or 3 weeks and we decided that for us it was not worth it.

 

[Elizabeth555]

Hi Gracie:

My husband has been taking Rilutek for about 1-1/2 years now. He says he has no noticeable side effects. Like so many other people have said, it can be hard to tell if Rilutek helps or not.

As for the cost, we receive this drug FOR FREE from NORD (National Organization for Rare Disorders). There is a long application to fill out and send in, but I have never heard of anyone being turned down.

Lukily for us our Neurologist at Cleveland Clinic CARED about us and told me about NORD. Otherwise I would not have known.

Here is the number for more info 800-459-7599.

 

[erinjca]

I have been on Rilutek for almost 3 years without any side effects. I haven't progressed in 8 months per the ALS clinic. Its so hard to tell if its the Rilutek, Lithium or the disease. Since neither medicine gives me side effects and each one cost $65 for 3 month supply I am staying on them.

 

[sadiemae]

My husband has been on it for 5 months. His progression has not slowed, but he has no side effects, and since we do not have to pay(VA) we stay on it. If it would be a financial hardship, we wouldnt continue it. With the new Obama care, maybe the prescription cap will change. The baclofen and pain meds would be something that we would continue on, even if it were a financial hardship. HUGS Lori

 

[Gracie]

Thank you all so much, I appreciate your honesty and welcomed advice.

 

[rknt50a]

If anyone in the U.S. has problems affording any brand-name drug, I encourage you to contact the pharmaceutical company directly. They all have patient assistance programs to provide products to patients who cannot pay.

As was mentioned in this thread, Sanofi-aventis has a patient assistance program to insure that people with ALS have access to Rilutek. The program is administered for Sanofi-aventis by NORD.

More info --
Sanofi-aventis Patient Assistance Program | RILUTEK

 

[Altair]

My wife took rilutek for three months and the side effects were negative to the point she said , "no more". So we stopped. She also felt it had triggered the negative effect on her legs. This was two years ago.

 

[landofsmiles]

Looks like if you've been on it for 18 months or more you might as well stop. This is from the Rilutek site>>>

While it is not a cure, RILUTEK has been shown to significantly extend the time before invasive breathing assistance is needed and/or survival time (an average of 2 to 3 months longer than people that took a placebo). After 18 months of treatment, there was no difference between those who took RILUTEK and those who took a placebo. What this means is that, in clinical trials, RILUTEK offered a survival benefit early in ALS treatment.

 

[Phil M]

If it was me. I would not pay out of pocket for it. JMHO...

 

[lostingeorgia]

It's true that the original study did say that there wasn't a discernable difference between the groups after 18 months, my neurologist keeps people on it even after 18 months as long as they tolerate the drug. As you can see from the thread, some people don't have a problem with Rilutek, others do. Whether or not to continue should be a discussion between you and your doctor, but in the end, it's your choice.

Yes, it's expensive, but the patent expires next year, so maybe generic Rilozole will be available. As others have noted, there are ways to get it at a much lower cost.

 

[rkyoung]

Dear Gracie,

I felt so compelled to answer you because of your worry of the cost of this medication. Your husband is catastrophically ill. He qualifies for SSI, Medicare and Medicaid. This disease is considered by the government sufficient to assist in its cost from durable medical goods, home health care, and most importantly medication. The cost to my late sister was $6.00 per month for Rilutek/Riluzole. Log onto socialsecurity.gov and medicare.gov. Your determination will come within weeks. Where are the social workers associated with your clinic? Why aren't the clinics coupling medical care and social service care? This is the single worst disastrous turn of events for a human being and they are allowing you to worry about costs of drugs? Its unconscionable! You think that these specialists would know better than to allow a patient and family to fend for themselves like its just any other diagnosis. It isn't, and I'm damn angry about it!

 

[landofsmiles]

Be grateful if you can get it cheap or subsidised. Costing me over US$800 for 1 box of 56 here...4 weeks worth.

 

[Will]

Is there a date for the generic version of Rilutek to be released. I read that Sun Pharmaceuticals is going to make it.

 

[John1]

Dear Gracie,

I felt so compelled to answer you because of your worry of the cost of this medication....

Gracie has not visited this site since last June.