Rilutek questions

[ShellyRenee]

Good Afternoon,

I want to apologize here if I seem to annoy some with all of my questions regarding ALS. Coming from a middle size family, I feel (I know) I am the only one checking into this disease, I do not know where or how to get any answers.
Rilutek: how does one know this is working for THEM? Is there any test or maybe a right question to ask moms neurologist? My parents don't have any coverage for prescriptions (silly on their part and a lesson has been learned), They do not qualify for help because one she's 64 yrs old and they did well for themselves over the yrs. Here the Rilutek cost $900.00 a month. Her dr. told her that rilutek delayed some ALS things by 6 wks to 3 months. My question is really is this worth doing if the end is going to still be the same outcome. I am in the learning phase of this ALS so please go easy on me if I say or said something that is wrong. I feel like a kid in High School trying to do a report on something and then reporting back to my parents. My father that is since mom still wishes not to talk about anything.

Shelly

 

[TBear]

Hi Shelly:
Your questions are not annoying... I hope that my answers aren't too annoying!
As far as Riluzol is concerned, I think the reported average is 3 months extended over those not taking it. I don't think that there is a way of determining if you dad would be getting any benefit from the drug if he was taking it. The results are based on aggregate statistics and must assume some sort of median survival period. I have a friend who has been on Riluzol for 13 years... no way of telling whether his slow rate of progression is the result of the drug or the supplements/lifestyle is has. (I call him the poster-boy for Rilutek).
I know I didn't answer your question but at $900. per month (that's about $1200 Canadian!) I would go broke pretty quickly. Is there no other source for your parents?
I hope somebody else has a better answer to your question... especially someone from the U.S. who may have a handle on support for prescription drugs.

CHeers

T.

 

[ronrfc]

I know the Rehab Centre at the Ottawa Hospital can get Rilutek from the manufacturer Aventis Pharma for little cost, certainly a lot less that $900.

 

[terri]

Shelly, call NORD, I think they will be able to help you with the cost. To qualify you must NOT be on Medicaid or have prescriiption insurance. That's a change isn't it? If you can not find the number on the internet, call the ALS society for the number, they are the ones that told me about it. I have received the application from them but I have not filled it out yet.

 

[Al]

I took it for about a year and am not sure if it did any good. They say mine is slow moving but it seems fast to me. I am not taking it now for a couple of months just to see if I notice any changes. My drug plan pays $660 per month when I do take it.

 

[Al]

Thanks for posting the information David. There are some new members on the forum and that information is just about what some were looking for.

 

[Suzanna]

Good Afternoon,

I want to apologize here if I seem to annoy some with all of my questions regarding ALS. Coming from a middle size family, I feel (I know) I am the only one checking into this disease, I do not know where or how to get any answers.
Rilutek: how does one know this is working for THEM? Is there any test or maybe a right question to ask moms neurologist? My parents don't have any coverage for prescriptions (silly on their part and a lesson has been learned), They do not qualify for help because one she's 64 yrs old and they did well for themselves over the yrs. Here the Rilutek cost $900.00 a month. Her dr. told her that rilutek delayed some ALS things by 6 wks to 3 months. My question is really is this worth doing if the end is going to still be the same outcome. I am in the learning phase of this ALS so please go easy on me if I say or said something that is wrong. I feel like a kid in High School trying to do a report on something and then reporting back to my parents. My father that is since mom still wishes not to talk about anything.

Shelly

Dear Shelly, I have been just diagnosed. I know many DR's as friends and who are treating me, they ALL say they would take the drug.
In Edmonton, throuh the University Hospital, they have a 'campassionate care Fund' that pays for my Rilutek. So far I've had no side affects, But i've been told 'the results are individual'
Please check out the clinics as they can find a way to provide it free.
I hope this helps.

Suzanna

 

[rcharlton]

Hi,

I was hemming and hawing about taking Rilutek for some time.

I do have drug coverage so fortunately money was not the issue.

I spoke with Dr. Michael Strong in London and he advised that more recent studies show Rilutek may prolong life by year or so and did recommend my taking it.

I've been taking it for about a month now - no noticeable side effects yet.

Richard

 

[rcharlton]

I may be naive Jerry - but how do doctors in Canada directly profit from prescribing certain drugs?

I know the drug companies expend a lot of money to woo doctors and convince them why they should be prescibing their drugs to patients - but doctors do not make any money prescribing drugs. I suppose you might say that there is collusion between doctors and drug companies - but this would all be under the table and illegal.

Jerry has been great posting tons of information on the dangers of MSG and how the food industry tries to hide it in ingredients - and it seems apparant that MSG is best avoided by PALS - but I don't think it's a simple as avoiding just MSG.

Although I don't think any definitve study has been done, there seems to be some correlation between glutamate and ALS - and PALS would be well advised to limit their intake of glutamates.

Although a nuisance, it is possible to avoid MSG by eliminating processed foods - but other glutamates are naturally present in pretty much all foods we eat to a greater or lesser degree - and it's simply not possible to eliminate all sources of glutamate in one's diet.

This is why I decided to start taking Riluzole.

 

[leslhart]

My two bits,
I was part of the Riluzol study, so I've been on it for 4 years now. My insurance covers the cost now. I've had no side effects so far. My progression continues to be slow, but like Al, it seems very fast to me. I was doing the complete cocktail which was vitamin e, coq10, creatine and rilusol. Now I just take Riluzol. I only "eat" liquid nutrition through the tube and drink fruit juice. Its boring but consistant. My weight has stayed the same for a year now and aside from a couple bouts of kidney stones (ouch!) it seems to be working well for me. I think a person can go nuts trying to figure out the best nutritional mix to solve everything. I leave that to the experts. Personally, I think a simple and consistant routine is best. Less to think about and makes it easier to monitor changes.

 

[TBear]

Les, nice to see you back. Hope that you and the lovely Holly are enjoying a great holiday season out on the left coast.
I think that somewhere in this forum there was reported another study on riluzol has been conducted that pushes the average survivorship a few more months (to possibly a year or more). Adds to the debate on how effective it might be.
Good luck to all on this.

CHeers

T.

 

[braveheart]

I was put on Rilutek right away, I live in Canada, have no private ins. and have a lower income, didn't have to apply. I ask my ALS DR. if it really helped, I'd hear it extended life by about 3 mos. He said that was true so, since I don't have to pay for it, it doesn't bother me and it's all they have to offer I might as well take it. Praying for healing is a possitive thing to do, if you believe in prayer, I do.

 

[braveheart]

Me again. I was reading Jerry's comment on MSG. I understand from people in the know that gluten is what we eat, it is not glutenate. I think I want to stay away from bashing any food or drug since I don't know it all and I don't believe everything I read, esp. scares about food PALS eat or not. I want to be as informed responsibly as possible and not read opinions that can really bring me down. This topic has been a burr under my saddle since I came along and so I decided to speak out, I know I'm not the only one that has.

 

[Al]

Hi Sarah. George Goodwin posted in another thread that he has had ALS since 1991 and has not taken Rilutek or changed his diet or taken any of the other things that are (supposedly) good for you. He still gets around and runs the als independence website.
What works for him may not work for you or me. What works for Jerry is fine for Jerry. Maybe not for the rest of us. Jerry is passionate about the MSG and aspartame thing. I've never read Blaylocks book but then I haven't read " The South Beach Diet" book either. Some people swear by it and some people know that someone wrote a book to make money. To each his own. I don't belittle someone because they don't agree with my philosophy on life. I may try to gently sway them to my way but in the end we have to make our own choices. That's life and we're all in this together.
Al

 

[ladave]

I've been reading a lot of information on ALS since my diagnosed three weeks ago and the diet issue seems to be the most controversial aspect. Jerry represents one side which strongly believes that diet plays a strong role in causing als. The other side feels just as strongly, saying there would be many more cases of ALS if msg and aspartame were the cause.

Myself, I've always believed in sensible moderation. I'm going to modify my diet to eliminate as much artificial preservatives and ingredients as possible, eat more fruits and veggies, and I will give up diet drinks (they didn't do much to keep me slim anyway). But I don't forsee me ever eating just berries. I'm seeking balance here. My two cents anyway.