Worse off with Rilutek?

[Big Mike]

I've been taking Rilutek for 4 months. It doesn't seem to be helping at all. I was wondering if some PALS feel like their symptoms worsened after starting it or if the disease may have progressed faster while on it? Thanks.

 

[BarryG]

Big Mike, I've been on Rilutek for about 16 months now and to be honest I can't tell you if it is doing anything for me, good or bad. I went off of it for a couple of weeks in February and I didn't notice any change at all. But I don't think that that is how it works (if it does work at all), from what I understand it isn't supposed to make you feel better, it is only supposed to extend your life by a few months.

 

[Danijela]

Hi Mike,

Barry is right, you do not notice any changes (except side effects, if you are getting some) when taking Rilutek. It would not, for example, make your body less stiff is suffering from spasticity, or a muscle less atrophied. It simply mops up a chemical in the brain (I think)
which they think is one of the many things responsible for the death of motor neurons.

My partner was on it for 5 months with no side effects, came off for 3 months and now is back on (again no side effects). I guess if you have to pay for it you may be worse off financially.

All the best, D.

 

[Al]

Hi Mike.. There's been a lot of pro's and cons written about Rilutek. Search above for it. There is really no clear answer. I've taken it on and off for 6 years and just went off because it was giving me stomach issues. Read what you can find and then make an informed decision.

AL.

 

[Big Mike]

Thanks for the reponse guys. After talking to my nerurologist yesterday, I'll be staying on it for now, especially since my liver enymes have leveled off.

Say Barry, what part of Alberta do you live in? I live in northcentral Montana, near Great Falls.

 

[tdamess]

my son has been taking it for about 2 weeks now maybe a little less but he has been useing weights for his arm he says it like his hand musle is comming back and his wife says his arm looks better the twitching has seem to stop has it done this for anyone else and can you rebuild musle up again if it is als

 

[BarryG]

Sorry Big Milke, I missed your question. I am in west-central Alberta just east of Jasper National Park, a long way from the border. I have been your way a number of times, once to Missoula and once to Bozeman and Yellowstone, beautiful big sky country! Do you want me to put you on my Google member map? If so is Great Falls Ok or somewhere else?

 

[Micheline]

I have decided to go off my Rilutek. Been on it 9 months and i just wonder. I still take the anti- depressants. Things have happened in my personal life that I need to take care of myself and I have huge decissions (sp) to make in the next week. This disease has destroyed my life, will and contentment. So I do understand the fear of beening alone and facing things by yourself. Turn to your health care team, mine understands and are willing to do what I wish to do.

 

[Big Mike]

Sorry Big Milke, I missed your question. I am in west-central Alberta just east of Jasper National Park, a long way from the border. I have been your way a number of times, once to Missoula and once to Bozeman and Yellowstone, beautiful big sky country! Do you want me to put you on my Google member map? If so is Great Falls Ok or somewhere else?

Sure Barry, you can put me on your member map. I live in Fairfield, which is just outside of Great Falls but Great Falls is close enough.

 

[Danijela]

my son has been taking it for about 2 weeks now maybe a little less but he has been useing weights for his arm he says it like his hand musle is comming back and his wife says his arm looks better the twitching has seem to stop has it done this for anyone else and can you rebuild musle up again if it is als

Hi,

I have heard about the reduction in twitching occurring upon taking Rilutek, but also an increase of twitching is reported by some patients, increase in weakness etc.

As for the second part of your question, to my knowledge the answers is "no", if you have ALS you can not rebuild muscle. There is some evidence that light exercise may be beneficial for unaffected muscles, but what is lost is lost.

Regards, D.

 

[tdamess]

thank you very much danijela

 

[Big Mike]

Hi,

I have heard about the reduction in twitching occurring upon taking Rilutek, but also an increase of twitching is reported by some patients, increase in weakness etc.

As for the second part of your question, to my knowledge the answers is "no", if you have ALS you can not rebuild muscle. There is some evidence that light exercise may be beneficial for unaffected muscles, but what is lost is lost.

Regards, D.[/QUOTE

Just speaking from my own experience, in unaffected or largely unaffected areas, you can probably strengthen or even build a little muscle but not in moderately or greatly affected areas.

 

[tdamess]

thank you bigmike -i hope it is so but some more time will tell this is still new and were are hoping

 

[froggy102]

my dad tried it for a few weeks and stopped, he said it made him feel fuzzy and he was sleepy a lot.

 

[tdamess]

must affect people differentley