Experiences with Rilutek

[CindyM]

Hi Capt Al. Sorry your Turkey day got messed up. Sounds painful. I think you should tell your friends and family that Thanksgiving is a movable feast and they need to do it all over again! Well, maybe on a slightly smaller scale with leftovers or even Pizza but certainly another party is in order! Tell them this is on expert advice! Have a good one, Cindy

 

[Brentt]

Nord

( National Organization of Rare Disorders ) NORD
Will cover the costs of Rilutek or Riluzol whichever one it really is .I have been on it for about 4 years now and the way my doctor explained the liver and kidneys issue is that if you don't have any problems with the organs then the drug will not normally affect them .It's those people that have a history of problems that relate to the organs wheather it's medical or self abuse like too much alcohol or other negatives things that affect the organs can have negative effects from this medication .
If your neurologist doesn't have the number I have it here .
( NORD ) 1 - 800 - 459 - 7599 .
Hope this helps .

 

[liz]

Thanks much for the info, Brentt.

Liz

 

[liz]

OK - I got my script and insurance will pay. Am definitely feeling lucky about the latter. So now we'll try it and see how it goes.

Liz

 

[bryanmn]

Rilutek it can't hurt and its all we have

I have been taking rilutek since July and I have not experienced any side affects, my stomach has been fine. I am on a cocktail of rilutek, prozac, baclofen and the occasional beer or capt morgan. Most insurance in the US will cover the cost, and if it gives you 3 months or 2 years even better

 

[liz]

Bob -

I haven't got my supply yet. By going through the mail order part of our subscription plan, we'll pay only $40.00 for a three month supply. I could not believe our luck after reading of the costs some folks faced when trying to pay for this med. Something is very wrong with our health care system if these kinds of disparaties exist.

I'm also going to start some antioxidant supplement combo recommended by the ALS clinic. I have fasiculations aplenty but don't feel the need to take meds for that yet.

I was also having a great deal of trouble sleeping. Had been taking Xanax during the day for the anxiety but stopping by noon so I could have a drink or two at night (didn't want to pull a Karen Ann Quinlan on my family). So when I told the doc at the ALS clinic this, he says (after that red wine remark) to have my drink or two and then take not one but two Xanax and that should do the trick. I couldn't believe what I was hearing but was desperate enough that I did it. Got nine uninterupted hours of sleep two nights in a row now and am getting ready to go for three! Feeling much more human again - so much so that I agreed to let a couple of extra teens sleep over for the night while my husband is away- wonder how their parents would feel to hear the mom in charge has got ALS and is coasting on booze and benzos. :-D (Sorry, I'm bad.)

Actually, I'm hoping now that I'm more rested I can resume swimming which I was doing even as recently as two weeks ago. I dropped to a less rigorous routine but I feel good in the water - keeps me loose. It is on land (weight bearing) where my legs get to feeling weak. Might as well keep going as long as I can.

Nice chatting with you.

Liz