Rilutek

[Erica]

I was given a script for Rilutek last Monday.
I'm concent with multitude of side effects from this drug and only 3 to 6mo of potentialy extending survival.
Would appreciate to hear other PALS opinion or experience with Rilutek.
Thank you, Cookie

[GlenBrittle]

I have taken it since December 08. It took me about a week to get used to it , I would get a little spacey for about 20 minutes after taking it. Now , its just another pill I take twice daily. Is it working ? Hell if I know , but I am still here !!

When you start , plan for monthly blood tests to watch your liver for a while. Mine were good , and the only side effect I can tell you is that I yawn a lot more .

There are others that had worse side-effects. Also , its not a cheap drug. Its one of those drugs that bring some lube with you to the pharmacy . Yep , your pocket book is going to get raped.

Glen

[BethU]

Hi, Cookie ... I took it for a month, and experienced a lot of annoying twitching with it, so stopped taking it, and the twitching went away.

Many people take it with no side effects whatsoever. My philosophy is, if it doesn't bother you and you can afford it, go for it! If you keep your weight up, you can add at least another six months or more. (My neuro said studies show keeping your weight up extends your life even more than Rilutek.) Six months from Rilutek, six months from holding your weight steady = an extra year. Maybe a cure will be found in that year.

[peter57]

Hi Cookie,
I have been on it for 12 months now with no side effects that i can see.
Like others have written, keping your weight up also is a benifit and who know what is found in that time.
I am interested though in the price of Rilutek in the states.
I have seen a couple of posts which talk about the price of it being expensive.

Here in the " Land down under", Australia, (yes we pinched the America cup some time ago from you) we pay app $33 Aus. (say $40.00 US) for 1 months supply.

It is listed on our drug list thus the price we pay is offset by the government.
(the full price on the packet is app $660.00 (say $800 US)
(I hope that is not what you are paying)

cheers Peter

[t34gib]

$972.00 per month, but lucky to have insurance and only pay $50.00 copay.
NancyS

[GlenBrittle]

OUCH ... mine are $625 per month - 100% covered , the pharmacy bills the insurance directly.

[BarryG]

In Canada, at least in Alberta, the list price is $650 Canadian ($596 US or $714 Australian) per month. I pay $25 per month plus about $80 per month for insurance coverage for any prescription that I or my family needs. So about $100 per month for me.

[peter57]

The prices vary a lot

(Ops i got my converson the wrong way around so $33 Aus equates to less than $28 US and the full price of $660 equates to app $540 US)

We dont have to have any special insurance to get these or lots of other drugs for a discounted from list price.

I would however pay whatever (within reason) to keep on fighting
cheers

[Mahealani]

I've been on it since 1/09 with no effects. I felt a little tired at first but can't say for sure it was from the meds.

My co-payment here in Hawaii is $20 per month - insurance pays the rest.

My progression is faster than I had hoped, can't say its working but I did hear that it works best on bulbar symptoms - so far I only have some slurred speech. I had limb onset in 10/08 as my dx.

Mahea

[joelc]

The cost in BC is $950.00 a month and the total cost comes out of the patients pocket. That is why I could never consider it.

[peter57]

Hi Joelc, Glen and others who have to pay large amounts for this drug
(and i guess some other drugs as well)

I wish i could buy a container load and ship it to you but i am unable to.

Keep on fighting (i know you all are)

cheers

[Jennifer51]

I have been taking it since May 08..no side effects at all. Does it work, darned if I know, but at least I FEEL I am doing something....although my progression seems to be fairly fast. Cost...sorry for you all, but mine is entirely free...well... paid for from the taxes we have paid all our lives.

[Danijela]

No side affects experienced by my partner who has been taking it since Nov 08.

[asantiago]

Hi Cookie,
My mom said she didn't like how she felt when she was on it. I think she took it for about a month maybe. When she stopped taking it she felt a lot better. My mom was also very what's the word for it??? Easily influenced by thoughts, in other words if I told her that a gum drop would make her run really fast, she probably would go run her fastest race ever. So I'm not really sure if her stopping taking it really made her feel better or if she just thought it did.

She did display an increase in appetite about the time she stopped taking it, but with so much going on I don't know if it's fair to say that it was attributed just to her stopping the drug.

Additionally, her nurse told her that if insurance didn't cover it for her (luckily it did) to contact the Pharm. company directly and that they often would provide it at a much lower cost.

[SteveS]

Mich has been on it now for quite a while with no side effects and between my extended and hers we dont pay anything except the odd despensing fee of a few dollars depending on where we have the perscription filled.

[Erica]

Thank you all for responding to my post. I'll give it a try.Cookie

[dldred]

Cookie,

My Mom started taking it about 2 weeks ago and had a little dizziness at first. She said it was like being drunk, (she said she kind of liked it). That went away after about a week. She has no side effects and said she thinks it has given her more energy. She said she would have to experience some bad side effects to stop taking it. She also thinks it gives her a better appetite, which is great for her to keep her weight up. I hope you have good luck with it also.

Dana

[brendapals]

cookie,
I've been on it 13 months now-luckily all I pay is$20 per month copay. Don't knowif it helps, but I haven't had any ill effects from it-unless you can count forgetting to take it!!!!!!!!!!!!!!!...oh wait-that's the memory pill! :lol::lol::lol::lol:
Best wishes to you!
-brenda

[MtPockets]

I was on it for 2 years at $1000 for a months supply. When the Doctor told me it would prolong my life maybe 3 months in the end stages of the disease, I stopped taking the med. Not worth it to me, but I hope you do well with it.

[Tich1]

Hi cookie , I take it with no side effects , and I have a blood test every month to check for liver damage as that can be a side effect in some . I know it's a very expensive drug and I am thankful that I am exempt from paying anything for my prescriptions .
All the very best hun xx

[t34gib]

I started taking a few weeks ago and have not really had any side affects although I seem to think my speech is a bit more slurred and the Dr. says if it makes you tired that would account for the slurred speech. But he also said to try and take it to see how well I tolerate it. I am hoping to go on the ceftrioxine drug study in a month or so and he thought that the two combined would be good. Also I am keeping my weight up for now although i have lost a few pounds. But i have plenty to spare. I was given excercises to keep my muscles working and was told that as the motor neurons die the others compensate for it if you are keeping your muscles strong. Not overworked but strong. He said that losing weight would be ok as long as i did not lose muscle. So i think i have a way to go. I am Bulbar and right now I have no symptoms in the limbs. I am still strong and playing the best golf I have ever played, so for that i am very grateful. I will try to hold on as long as possible. And today I got my new computer with communications software so that should help me communicate and be able to work for as long as possible.
All in all, I am good and will continue to take, do, or test anything I can to not only help myself but for others.
Hang in there.
NancyS

[indigosd]

My husband started on 50mg po bid two days ago. The first tablet made him EXTREMELY exhausted, sensitive to light, said he felt like his face was on fire and nauseated. Now he just says that he feels hungry [he has been eating larger amounts!] and still feels fairly nauseated most of the time. The drowsiness is nice because it may help him sleep at night. I paid $1089.77 at Walmart pharmacy for one months rx. His Neurologist didn't schedule any labs for Liver function tests and we are not scheduled another appt until September. hmmmm....one more thing that I will need to be on top of :] His SSDI will begin in December and he will have Medicare. I need to find a Medicare RX part D that I can afford but not sure where to start. We live in rural South Dakota. Any suggestions?
Thank you!

[asantiago]

indigosd,
When my mother was prescribed Rilutek, her nurse told her to contact the pharm company directy if her insurance wouldn't cover it. Have you tried this avenue yet? She said to tell them the financial strain it puts on your family and often they will over it at a greatly reduced cost.

[BethU]

Indigosd ... you might try AARP for a list of insurance plans with integrity, although since AARP sells its own insurance, there may be a conflict of interest. But I know insurance plans advertise that they've been "approved" by AARP.

I also understand that AARP's own plan is excellent, but not cheap. But it's a good place to start.

[tdamess]

i have aarp got it right thru s.s. it cost me 96.00 a month i belive but check it out it may go by your income up to a certain amount. it is a very good plan and precriptions are a different ins but aarp is also my drug coverage best of luck

[tdewees]

Hi, my mom has a $253 copay, but has the opportunity to switch insurance. Can anyone give us some ideas as to what the best insurance is for someone with ALS? Thank you.

[sharona]

Just make sure she picks one that covers pre existing conditions.Do you have a senior citizens help center near you .we have what is called circuit breaker.it helps senior when trying to decide on medicare part D& insurance groups.hope this helps
Sharon

[MtPockets]

Another source to check for free medicine is at:

http://www.sanofi-aventis.us/live/us/en/layout.jsp?scat=A1268951-5BF1-4287-BB19-2F0A9D64F93ERilutek® Manufacture has a program also.

[indigosd]

Hi everyone! I did call the manufacturer of Rilutek to see if I could apply for a reduced cost. They sent a ton of forms for me to fill out -[basically want both of my ovaries and the soul of our last born child!] DH has been on it for three weeks now-speech is deteriorating rapidly, increased and new twitches and NOW has muscle spasms! Had a spasm in his throat last night that clenched his jaw shut and was very painful and frightening for him. We are seriously considering not continuing it after this month. The million dollar question is;
Is it the Rillutek that is making him WORSE or rapid progression of the Bulbar Onset ALS? wahhhh feeling sad today...it comes and goes live the waves in the Ocean...

[sadiemae]

we just started on the Rilutek yesterday. For those of you who quit taking it because of side effects, how long was it before side effects started? Lori

[BethU]

Kay Marie and Lori ... those are the side effects I experienced (intense twitching, to the point where my whole left arm was jerking). I think the side effects started fairly soon after I began taking it. I took it for less than a month ... maybe three weeks plus a few days ... and the twitching and jerking got worse and worse. When I quit, it went away immediately.

It was disappointing, but it was clear it wasn't going to work for me. Since people who tolerate it don't really know how much ... or even if ... it is helping, I haven't worried about it. I have since had a six-month plateau (it seems to be over, alas), so you can still help contain the monster by weight control, and doing all the other "good things," (bi-pap, peg, etc.).

But I'm glad I tried it! Otherwise, I would always wonder ... what if?

[cara]

It made my mom sick with flu like symptoms. Put her in bed and even gave her a fever... $1200 a month, with insurance $375 Copay :shock:

[Phil M]

I have been taking it for 2 years. I didn't have any twitching until I started taking it. The twitching went away for the most part after taking it for 7 to 8 months. Other than that, I had no side effects. I wouldn't take it if I had to pay big money for it.

[MtPockets]

I think I took it for about 18 months if memory is right,, back in 2006.
I do not remember any side effects, except $$$$$ flying out the door.

[Zaphoon]

This has to be a drug that raises more questions than answers for me. I've not been offered the chance to have it and doubt I'd take it if the opportunity presented itself. It's hard for me to reconcile the cost given the drug's effectiveness.

Does the drug work? This is a question that is having a tough time being answered to my satisfaction. Hey, but then again, I'm the guy the neuro doesn't even want to prescribe baclofen to.

Zaphoon