Asking for help - Rilutek

[LNKa]

Our medical insurance company has recently refused our request to continue covering Rilutek after approx. 9 months long therapy. Due to their rule, they stop covering Rilutek as soon as they start covering BiPap. My husband had been breathing with no problems until now so we think Rilutek is still helpful for us. It is one year since onset now. We have asked for BiPap to overcome pneumonia and ocassional short-time breathing problems caused by exhaustation.

The only possibility left for us is buying it for the full price of 409 EUR. I'd like to ask if there is any way of buying Rilutek for a lower price, as we would like to continue in therapy as long as it is possible.

I'll be thankful for any help.

 

[brooksea]

LNka, I don't know where you'd be able to get Rilutek any cheaper. In the US, last I checked, it cost anywhere from $900-1200, which is over double what y'all pay at full price.

Maybe look into getting a used BiPap so insurance doesn't have to drop the Rilutek? I'm just putting that idea out there, as I have no idea what the resources are in your country.

I'm very sorry such decisions have to made! Good luck to you and your husband. Perhaps someone else will have a better idea that can help.

 

[notme]

I'm not even sure they could stop it here in the US--not when it's the ONLY drug to treat ALS. That's just criminal!

 

[nikolab]

Rilutek in Serbia cost about 230 euros. :wink:

 

[vzandt]

You can ask your doctor to fill out a form to request help from the company that makes the medication. Sometimes they lower the price and sometimes give it for free. Or ask your pharmacist.

 

[asad]

To each their own but my mom stopped Rilutek long time ago. She felt better without it.
Use the bipap as much as possible to keep his oxygen levels and energy high.

 

[lgelb]

I would second the notion to buy a used BiPAP. secondwind.com is one source. You'll pay less, even with replacing masks regularly, than what you would be paying for the Rilutek over a few months.

 

[Polar]

I stopped using Rilutek after the first year after reading all the clinical information, and finding signs of jaundice in my eyes.
And my drugs are covered 100% .. I suggest everyone read about the trials , while keeping in mind that ALS life spans can vary dramatically between individuals making accurate testing difficult if not impossible...
I don't remember what it was costing at the time.. I recall it being around $500 CND

 

[Bill Simpson]

I also stopped taking Rilutek. Back when I was first diagnosed with ALS, like everyone else I was prescribed. Over the next few months I began a rapid decline in breathing and muscle tone. A year ago I suffered complete respiratory failure, landing me in the hospital for 41 days in the acquisition of a PEG as well as a trac. A whole new realm of medications were prescribed, then after my release from the hospital and visit to my neurologist, once again Rilutek was prescribed. Soon thereafter I began respiratory decline. My CALS/wife took me off of the medication and I quickly began to recover, almost to the day. This was reported to my neurologist at next visit. He suggested resuming but with good record-keeping. I tolerated one PILL a day but when he went to the prescribed two a day, again I demonstrated a rapid decline in respiratory. Again I was taken off the medication and I rapidly improved. Once again he suggested we try it with good record-keeping. As soon as she resumed the medication, again I declined.

I believe that research shows that something around 1% cannot tolerate. I guess I'm a lucky one. I believe that had I not been on the medication at the start, I would still be able to walk and fend for myself. Presently I am confined to a PWC and connected to a ventilator at least 12 hours a day/night. (12 on/12 off)

I for one, do not preach praises for Rilutek. According to research it will only extend a few months and for me, I believe it has taken away months or years of my remaining time.

 

[CGARS]

At first, I said no thanks.
Since being on it (Mid March), I find my swallowing better and breathing better.

Down side is I find strength worse and energy down.

Like everything, and everyone, this seems to affect everyone different.

Cheers,
Casey