Hello, MoonWolfy...
When I was diagnosed by Johns Hopkins in Balt., Md in 2005 the doctor there said my prognosis was good and put me on Rilutek immediately! I had Blue Cross/Anthem back then and it's a good thing as Rilutek is really expensive ($1,200 to $1,400 a monthly supply of 50mg taken twice a day) BUT with my insurance I only had a co-pay of $75.00 initially a year and then just $25.00 a month after that (starting over again every year).
Now that I'm on Medicare (I have Medicare part-D and Humana as a drug plan now as of Sept. 2012) I am faced with the delimma that after just 2 months of a $38.00 co-pay, that I will fall into a "donut hole" and will have to pay half of the cost of Rilutek ($600-$800) for a few months before it goes back to a $38.00 copay again. I am just taking one pill right now and trying to stretch it out...I don't want to build up a huge debt every year.....at least I don't think I do...I have considered weaning myself off...Since the FDA has ONLY recognized Rilutek for the treatment of ALS one can NOT get monetary assistance with the drug programs out there (I've tried )
Enough about me....Hardly anyone that has PLS is prescribed Rilutek...even my local Neurologist has never prescribed it but I will tell you to DO IT! If you are able to get it for a good price through insurance then do it! It's one of those drugs that will have you take a simple blood test yearly to check your liver...after all these years of taking Rilutek my liver tests are fine! I also take Milk Thistle ( a natural product that is GOOD for one's liver) but ask your phamacist as some people with blood diseases shouldn't take it.
When I first started taking it, I had flu-like symptoms (mainly body aches) but after about 2 weeks the symptoms disappeared. I did have a day here and there where I wanted to sleep all day but that disappeared after a few months. I have the Bulbar type of PLS (speech) but even though I was on Rilutek my walking ability still went downhill in a matter of months but it may have been 'cause the Rilutek hadn't built up in my system enough....I use a walker (rollator) and a cane or I "grope" things (walls, furniture, counters)...I can free-walk but am very stiff and kinda spastic.
BUT! I still take care of my house (it's just me) and garden....drive a car...do my shopping....run errands....put up a Christmas tree......all these things I still do, I believe, with Rilutek and the Grace of God. (That's why I'm still wrestling with building up debt or not....)
I only found out THIS year HOW Rilutek works....when I first started taking it, "they" didn't know HOW it worked...but that it DID work. Now I've read that it keeps your nerve cells in your brain from experiencing too much glutamate (your brain needs SOME but not TOO much).
No one is doing any studies about PLS and Rilutek but by all means TAKE IT and don't be afraid! Some studies say Rilutek only works minimally....who knows...perhaps it's my positive mental attitude (and a placebo effect from Rilutek) and, rather, my faith in God that is ACTUALLY working... I would NEVER take God out of this equation anyway....He's got the final say of whether it works or not....I mean....I've fallen MANY times but have gotten up, adjusted my gate, slowed down, taken my time, swallowed my pride and just kept on going.....I believe (and this may have been put in my mind by God) that you MUST keep walking , talking and MOVING to keep the electrical connection going between your brain and your limbs........ keep going and never give up!