Riluzole/ Radicava discussion...

[mytmouz]

I try to use the search function as much as possible, but I have a few questions I don't see an answer for. The long Rilutek thread is no longer available to open for discussion. Is there a reason due to thread age, or was it for something else. All updates on the subject seem to cease on here at the same time. My reason for asking, is my neurologist is pushing my insurance to approve it.

Secondly, I need to determine if it's worth it to me to try it, as I am going down so fast. I can no longer stand using a Walker, and losing arm strength in both sides. I was still walking this time last year, and an EMG showed function loss in only my right leg at that time. I want to keep what functions I have left,, to assist my caregivers, but if the med is not effective for me, then I can forgo it.

 

[KarenNWendyn]

Riluzole slows down progression maybe by about 10%. It’s going to be most effective if started early in the course of ALS, or for someone with slow progression. If your progression is rapid, the benefits will be less apparent. It won’t arrest your progression but it may slow it slightly. You could take the position that every little bit helps. It’s your call.

 

[Nikki J]

All threads close automatically due to inactivity.

riluzole in general slows progression by about 10 percent. Probably more if started very early when you are still functioning fairly independently. 10 percent slowing is a big deal if you are slow progressing not so much if you are fast.

if insurance covers it well ( I am somewhat surprised it needs authorization as prices have dropped) then it is worth a try probably. It is a pill so the treatment burden is low. I got slightly queasy at first but it went away after a couple of weeks. It requires liver blood tests periodically

 

[mytmouz]

Sigh, I appreciate your prompt responses. As a moderator on other websites, I know how thankless it can be. The sigh is for my screw up. I am taking Rilutek, I meant to ask about Radicava. I don't see how to edit the thread title, so if one of you can, I would appreciate it.

 

[KarenNWendyn]

Radicava fairs maybe a bit better than Riluzole, but because of the cost, insurances are more restrictive about whom they will cover.

check out this thread.

Have you started Radicava? Use this thread to discuss experiences with receiving radi

Has anyone started Radicava yet? If so, please tell us how it's going. How was it getting approval? Is your doctor supportive? Have you noticed any changes in any aspect of your ALS? I'm especially interested in any bulbar-onset folks and how Radicava affects their speech. Although it's...

www.alsforums.com

I’ll change the title of your thread from Rilutek discussion to Riluzole/ Radicava discussion.
Discussions are generally a good thing .

 

[mytmouz]

Thanks, that thread is one of the ones I referenced.

 

[karzy81]

My dad used it early on and I truly believe it didn’t help. All it did was take away time spent with his family in my opinion. Totally up to you, I am sure that other people have had more of a positive experience with it. Good luck

 

[Nikki J]

I don’t take it. I had been symptomatic too long to have it approved but I don’t want it so it was ok. My reasons the group that showed benefit in the trial were within 2 years of onset, relatively fast to average progression rates, ok breathing and able to function independently. I had the last 2 but not the first 2. The group was also ethnically Japanese which I am not and almost certainly not c9 which I am. i feel I sm just too different from the trial group My other reason was what Karzy said. The treatment burden frequent infusions which as I am not homebound would have meant going somewhere and the need for a PICC or a port and my veins would not allow regular ivs that often.

 

[KarenNWendyn]

I chose not to take it either. My neurologist wasn’t that excited about it, and frankly neither was I based on the studies showing a benefit only in one subgroup of PALS. There was some delay in confirming my diagnosis (neurologist was certain I had some form of MND but wanted to do more testing over time before confirming ALS). By the time the diagnosis was officially confirmed, I was between insurances and anticipated difficulty getting it approved until I qualified for Medicare. I was also somewhat hesitant about the inconvenience of infusions and the port.

Do I regret my decision? Not really. However if I could wave the magic wand and go back in time, I would have been more likely to push for it had neuro been willing to get it for me in the “probable ALS” stage when I believe it might have done more good, though I’ve always been on the fence about it.

On the other hand, I did go on Riluzole because of it being simple and convenient to administer and covered by my insurance. Who knows if it has helped, but I remain on it to this day.

 

[ReginaS]

My partner had the choice at the time and decided against Radicava as ALS introduced enough changes... he did not want more limitations on his time due to all the infusions. His progression was on the faster side but he did not know that yet when he decided against Radicava.

We know someone who is doing relatively OK on Radicava - slow progression.

 

[mytmouz]

I appreciate the responses...

 

[diagnosed2016]

My husband was on Radicava for almost 2 years before he passed. He thought it helped him; he felt a little better during cycles, even near the end. We did infusions at home, while watching tv together so it wasn’t a big time waste, since we’d be doing that anyway.

 

[KenM]

I've been on Radicava for 14 months. Until 3 months ago, I was actually enjoying increased muscle strength in my legs for an 7-8 month period. Since July I've seen modest loss in leg strength. I can't tell you if the Radicava had anything to do with the temporary leg strengthening, single case studies are useless for that kind of question. But I can say that it is not a big hassle to do infusions at home, so it;s not as big an inconvenience as some suggest. But it's very pricey if your insurance does not cover it.