Old 12-17-2012, 09:18 PM #1
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Default Rilutek?

I was just prescribed Rilutek for my PLS and was wondering if anyone else has ever taken? My doctor said it will hopefully improve my swallowing and speech. I was just tried on a very low dose of zanaflex and I was able to speak for first time in two years, which was a miracle. However, it stopped working after two weeks and back to no voice again. He increased my dose hoping would come back again and said he wanted to try Rilutek too. When I researched it I saw that it's used for ALS to try to slow progression and increase survival time and possibly prolong the need for a ventilator. Has anyone with PLS used this med before? Has it helped in any way?
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Old 12-17-2012, 10:26 PM #2
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Default Re: Rilutek?

Wow, that would be awesome if it helped. I don't have ALS or PLS and know very little about the drug, but I too was under the impression it only helped to slow progression, not relieve symptoms. Maybe it has a different effect in PLS vs. ALS? I'll be interested to read what others have to say on the topic, and also to hear how it works for you. Best of luck.
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Old 12-19-2012, 02:27 AM #3
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Default Re: Rilutek?

Docs don't always know what will work and what won't. That is why they "practice medicine". It's a hit and miss since they really do not have a cure. Have you tried baclofen? I take the tizanidine and baclofen and it helps me. Baclofen is longer duration in the body, where it seems to me the tizanidine is shorter in duration and makes me sleepy.
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Old 12-19-2012, 03:01 PM #4
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Default Re: Rilutek?

My dad who is 78 and who has ALS was on it for several months. He felt it wasn't helping him at all so he is no longer taking it. I heard that several people quit taking it because it increased their liver enzymes. One thing that did help my dad at night is the bi-pap. He has more energy in the day after using it.
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Old 12-20-2012, 02:09 AM #5
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Default Re: Rilutek?

My PALS took Rilutek for approximately 18 months and did fine. He had a strange reaction and lost his ability to "taste" food. His neuro took him off the meds with a hope that he could regain his taste but also because his liver "count" continued to elevate. Not sure what to recommend.... Thoughts being sent your way!
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Old 12-28-2012, 11:08 PM #6
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Default Re: Rilutek?

I don't think it can improve your ALS, only slow your progression.
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Old 12-29-2012, 12:32 PM #7
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Default Re: Rilutek?

I was prescribed Rilutek early on, it was not intended to improve any certain symptom. But my nero stated that there is a possibility that Rilutek could help with the progression from PLS to ALS if that was the course mine was taking. She did confirm that there is no proof or studies of this, but given the intent of Rilutek in ALS, it is possible that it has an affect of keeping it as upper motor neuron. I have no side effects from it, so to me I thought if it cause no harm to me and has even the slightest chance of keeping as PLS, I'm taking it.
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Old 12-30-2012, 03:48 PM #8
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Default Re: Rilutek?

Hi, I am a 43 year old woman with PLS and now highly suspected ALS from two different neuros. I have been put on Riluket been taking for a month, not sure if I notice a difference. I do however have notice that I either have a lot of energy at certain times during the coarse of the week or none at all which has been the usual for me. I am wondering if this drug has anything to do with it. I'm going for another EMG Wed. and Neuro on Thurs. I will ask him and let you guys know what he said. I'm confused.
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Old 12-31-2012, 11:17 AM #9
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Default Re: Rilutek?

I do took Rilutek when first diagnosed, but it gave severe bowels issues. We tried to adjust medicine, but nothing deemed to work. Doctor me off it, and I was told there not sure if it evens does anything, and if it does, very limited effect.
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Old 01-01-2013, 08:42 AM #10
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Default Re: Rilutek?

Anything that can truly postpone your progression is a good thing....good luck!
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Old 01-05-2013, 12:17 PM #11
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Default Re: Rilutek?

My EMG came out good, now more confused than ever. Keeping me on Rilutek for now but I am thinking of stopping it. Been sleeping better but only couple hours at a time.
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Old 01-06-2013, 01:08 AM #12
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Default Re: Rilutek?

Thank you to all who responded. I'm sorry it took me so long to respond back it's been crazy with the holidays. So far no side effects. I will continue to take in hopes will slow progression and not turn into ALS.
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Old 01-21-2013, 11:56 PM #13
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Default Re: Rilutek?

My mother took Rilutek, and her throat swelled up. My guess is that she was allergic.
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Old 01-22-2013, 12:16 PM #14
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Default Re: Rilutek?

Quote:
Originally Posted by AngelaRenee View Post
My mother took Rilutek, and her throat swelled up. My guess is that she was allergic.
Sorry to hear she was allergic. I am real sensitive to meds too. I don't know if it helps symptoms. My main med, zanaflex is the one helping. But if there's a chance it will slow progression then I will continue taking it as long as can. Unfortunately it's super expensive.
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Old 02-11-2013, 03:09 AM #15
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Default Re: Rilutek?

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!
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