is dosage of rilutek restricted because of expense?

[rocmg]

dear all,

my mum is about to start taking rilutek. i know it's a very expensive drug, but she will get the average dose on the NHS here in Britain.

Might it be possible if we suggest buying more, that could have a positive impact? i just wanted to check to see if anyone else had made this consideration before i ask the neuro.

god bless.

 

[Jennifer51]

dear all,

my mum is about to start taking rilutek. i know it's a very expensive drug, but she will get the average dose on the NHS here in Britain.

Might it be possible if we suggest buying more, that could have a positive impact? i just wanted to check to see if anyone else had made this consideration before i ask the neuro.

god bless.

No it is not to do with cost....my neuro accidentaly wrote up 3 pills per day...dose is TWO per day. My chemist would not hand the pills over and he said it was dangerous, so had to speak to the neuro to confirm the dose before he handed it over. and the correct dose is two. I was very happy with the drug, and would love to have taken more. Find the website for the drug and read what is says.

 

[ZenArcher]

Rilutek can be extremely harsh to the liver. For that reason alone I wouldn't recommend exceeding 100 mg/day. Also the studies done showed absolutely no benefit in increasing the dosage to more than 100 mg/day. To be perfectly honest Rilutek showed no statistical efficacy at any dosage until they used a different means of measure.

From the Sanofi-Aventis website:

Although these survival curves were not statistically significantly different when evaluated by the analysis specified in the study protocol (Logrank test p=0.12), the difference was found to be significant by another appropriate analysis (Wilcoxon test p=0.05).

Even using the Wilcoxon test if we assume a significance level or alpha of 5% it barely shows significance if at all.

 

[BarryG]

One of the first things that my docs did when they wrote my Rilutek prescription was arrange for regular blood tests. Like ZenArcher said too much is not good for your liver and given the questionable benefit of the drug overdoing it is not worth it. My dose was 100mg (one tablet twice a day) but has been cut back to one tablet per day (50mg) due to how it was affecting my taste. My neurologist didn't tell me that it would make any difference in the end except that it does cost me a little less per month.
Barry

 

[Danijela]

I noticed some people on PLM site are on 200mg per day. I believe Valya's young son recently diagnosed with ALS is also on 200mg per day.

 

[ZenArcher]

Taking more than 100 mg/day showed no difference in the studies. Why chance your liver and spend twice the money for no reason. I can think of much better ways to destroy my liver and have fun for $30/day :lol:

 

[Danijela]

Oh, I am not suggesting people should be exceeding recommended doses. Just finding it strange that the doctors are suggesting increased doses with some patients. My partner is on 100mg per day, and having regular liver function tests. D

 

[Al]

Just a guess here but a younger liver maybe can handle the higher dose for a period of time. Valya's son is only 18 I think so he hasn't abused it yet like us 50 plus folks.

AL.

 

[rocmg]

mum has never had any liver problems. she doesn't drink alcohol and has always followed a healthy diet. i might mention it again to our neuro tomorrow and see how he feels about it.

god bless.

 

[Danijela]

Al, I think that may be the case;-)

It is also worth considering liver function if one is thinking of taking part in any trials. For example, here in the UK there is a long list of conditions/meds that would rule patients out of a lithium trial, abnormal liver function being one of them.

 

[Valya]

Hello all. Funny this thread started right at this time....

Yes, my 18 year old son started 100mg daily of Rilutek about 11/30/08. On 12/29/08, he was seen by Dr. Rothstein at Johns Hopkins. He said (and I have this audibly recorded) that studies (he didn't cite which ones) have shown that a doubled dosage (200mg) of Rilutek is 'slightly' more effective than 100mg. As he said, and I quote, 'slightly' is better than nothing.

Johnny began doubling the Rilutek 1/30/09. His first liver function test two weeks later, was normal. His second liv func test was last Friday and came back slightly elevated..AST is 35 (norm is 12 - 32) and Billy (forget what that is, sorry) is 1.5 (norm is 0.2 - 1.0).

Tues of this week, he was seen at Forbes Norris in San Francisco and is scheduled to begin participation in a trial for Talampanel. I emailed his elevated liver enzymes results to Forbes Norris and his UC Davis Neuro. UC Davis said to continue the double dosage and recheck in two weeks. Forbes Norris said "It is usually recommeded that a patient stop riluzole only if their blood tests are greater than 2 - 3 times normal-so they can go quite high and be OK."

I responded to Forbes with asking what exactly does 'and be ok' mean? How long can a patient have elevated enzymes without damage to the liver?

He will have another liver func test in two weeks. I won't risk his liver being damaged for a double dose of a medication which only has marginal effectiveness at best.

 

[ZenArcher]

Valya, the liver function normally looks at AST, ALT and bilirubin. Rilutek has caused increases of greater than 5 times the normal levels. I can say that from personal experience. Slight elevations should be monitored but aren't cause to stop. I would ask your neurologist this though. The following is from the Sanofi-Aventis website concerning Rilutek:

Not displayed in Figure 2 are the results of 50 mg/day of RILUTEK which could not be statistically distinguished from placebo and the results of 200 mg/day which are essentially identical to 100 mg/day.

In my mind, and this is my opinion only, that $30/day is better spent on simple supplements to promote general health and having fun.

 

[Valya]

Hey Jeff. Thanks for the information from the Sanofi-Aventis website. I didn't think to look there. Perhaps this information was prior to additional studies? I'll email Dr. Rothstein at Johns Hopkins and ask what study he was referring to.

As far as the cost, we only pay a co-pay for medications. A one month supply for Rilutek of 200mg per day (120 tablets) cost $20.

Valya