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sand

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Anyone on Riulutek and Lithium? I just read the article about a clinical trial in Italy in an Alternatives Newsletter and took it to my neurologist, but he wouldn't write me a Rx. I will be going to my general doctor with the info. If you are taking Lithium and Rilutek, how much Lithium a day?
 

sral

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you should check out patients like me

About 100 pALS reported their results with lithium and it does not seem to have been effective for the majority

My mom took it for 6 months and it did not stop progression for her. She is currently still on it at a very low dose because when she tried to stop she had some withdrawal symptoms that were scary ... her speech got so slurred that she could not be understood.

Let me know if there is anything specific you'd like to know.
 

Whitsend

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Sand,

There was a whole thread in here regarding lithium. I can't locate it right now, but what I believe was the bottom line was it doesn't do anything.

You might want to try and find the thread. As I recall, Grampa AL had the most info.
 

Al

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Hi folks. Use the search feature and type Lithium. There are 4 or 5 threads on it.
AL.
 

brendapals

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hey folks,
Well, I have to say I started Lithium and Rilutek 10 days ago. I tell the people I work with that it's cool to know that I have ALS AND some sort of mental disorder at the same time! Of course they laugh until they cry!
I worked in retail pharmacy for 22 years before becoming a nurse 8 yrs ago. I know about the side effects of Lithium, however, it is inexpensive, my neuro prescribed it for me off label, of course, and I'm taking 150mg twice a day.
Can't even tell I'm taking it, I guess that's a good thing?
Keep the faith,
brenda
 

DBowman

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Hi, Sand!

I always thought that Lithium was used for the emotional lability associated with PLS(or maybe ALS( also). I was diagnosed at Johns Hopkins in Baltimore and I was told that with Rilutek my prognosis was good. It is supposed to slow down the progression but it takes 6-18 months to "kick in". The sooner one takes it the better BUT you will be asked to get occasional blood work(liver profiles) to check your liver enzymes amd make sure that everything is functioning normally(people on heart medicines have to do this, too). Mine have been fine. During the time I started Rilutek, my walking went downhill because I was just beginning to take it and like I said it takes time to build up in your system. Nothing can totally halt this affliction but I feel that I'm stable at this time. Look up the drug Riluzole (Rilutek) and it will give you details about drug interaction with other meds(OTC) and such. The wierd thing is "they" don't know HOW the drug works but they know that it works. I sometimes take Baclofen when I feel I need it and I take Quinine occasionally,too when I need it. But I don't suffer much from the muscle cramps...that's the worse thing about having this I think. I'm not sure if the Rilutek is helping with that or not...? BUT I hope you have prescription insurance 'cause Rilutek is NOT cheap. I am on Blue Cross through the plant I work in. Rilutek is shown to cost $856.00 per month but with Presc. Ins. it costs me $25.00 per month(taken twice a day on an empty stomach). It's expensive 'cause they don't make a whole lot of it.

Godspeed, DBowman
 

Jennifer51

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I always thought that Lithium was used for the emotional lability associated with PLS(or maybe ALS( also). I was diagnosed at Johns Hopkins in Baltimore and I was told that with Rilutek my prognosis was good. It is supposed to slow down the progression but it takes 6-18 months to "kick in". The sooner one takes it the better BUT you will be asked to get occasional blood work(liver profiles) to check your liver enzymes amd make sure that everything is functioning normally(people on heart medicines have to do this, too). Mine have been fine. During the time I started Rilutek, my walking went downhill because I was just beginning to take it and like I said it takes time to build up in your system. Nothing can totally halt this affliction but I feel that I'm stable at this time. Look up the drug Riluzole (Rilutek) and it will give you details about drug interaction with other meds(OTC) and such. The wierd thing is "they" don't know HOW the drug works but they know that it works. I sometimes take Baclofen when I feel I need it and I take Quinine occasionally,too when I need it. But I don't suffer much from the muscle cramps...that's the worse thing about having this I think. I'm not sure if the Rilutek is helping with that or not...? BUT I hope you have prescription insurance 'cause Rilutek is NOT cheap. I am on Blue Cross through the plant I work in. Rilutek is shown to cost $856.00 per month but with Presc. Ins. it costs me $25.00 per month(taken twice a day on an empty stomach). It's expensive 'cause they don't make a whole lot of it.

Godspeed, DBowman

I find it strange, or maybe not...that we get told many things about the same drugs, all different, from different so called professionals. I started taking Riluzole/Rilutek in the middle of May this year. Within HOURS of taking it I swore that the twitching (which was violent and all over my body, like I had a thousand rats and mice running inside me) ..well within hours I swore that it was beginning to subside, and over the next 2 weeks continued to reduce to a more acceptable level. During this time I went for a second opinion on the diagnosis and told the neuro, saying I did not know if it was my imagination. He said No that is exactly what it should do. My normal neuro however thinks it is all in my imagination. My speach therapist also noted an improvement within days of me starting the pills and here you are being told it takes 6-18 months to kick in. A friend did a lot of research for me and came up with....it takes about 2 weeks to get fully into your system and it will give you a gradually improving benefit all this time, but then it levels off. My speach is about the same, but my swallowing has improved on it, but alas, my arms and legs have slowly got worse. I dont really think the neuros REALLY know, after all they are only going on what people tell them not on their own experiences. jennifer51
 

sral

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DBowman/Jennifer,

Are you taking rilutek for ALS or PLS?

I thought it was prescribed for ALS.
 

sand

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DBowman,
I am on Rilutek, since May 30th, but I don't notice any difference. I do notice that if I skip my Neurontin my leg feels more numb and tingly.
 

Jennifer51

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DBowman/Jennifer,

Are you taking rilutek for ALS or PLS?

I thought it was prescribed for ALS.

This is Jennifer.... My Dx was for speudo bulbar onset ALS. After reading a lot on the forum and generally on the internet...which my neuro does not like me doing...but thats tough... I am beginning to think, hope and pray, that it might be PLS. I have a lot of muscle tightness, and pain/discomfort and I am sure my balance is not what it was...
I am seeing a new neuro at an ALS clinic in a couple of weeks and will ask him what he thinks. But I have read that PLS is often diagnosed as ALS to start with. Anyone any ideas of how they can tell the difference in the early stages. (first sumptoms were Jan 08 diagnosed early April 08) I had the usual MRI, blood tests, EMG and nerve conductive tests and lumbar puncture. The neuro said that the EMG results were concrete evidence of Pseudo bulbar als...but I am not giving up on any hope that he could be slightly wrong. Jennifer51
 

DBowman

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sral

I am on Rilutek for PLS. (my sister has a book on all the different types of drugs and it stated in that book about the length of time it took for the Rilutek to "kick in"-6-18 months and when I confronted my Neuro about it he didn't deny it ). I had 2-3 weeks of feeling like I was trying to get the flu and wondered if I wanted to continue with the Rilutek but then this feeling subsided. "They" originally thought I had ALS. Mine started years ago with a slurred word here and there. Then I began to get "nasal" if I talked for a long time. Followed by a little trouble swallowing and a few throat "spasms" which scared me enough to take an anti-anxiety drug for a short time until I got used to the way I swallow. It remained mostly bulbar until I began to trip and fall a LOT. It became easier to get off balance if something bumped into me or I leaned too far forward or backward. The leg heaviness came a little later and then the walking slowed...well I walk slower so I don't trip myself up. I was evaluated by a physical therapist and told my ankles, hips, and shoulders were weak. They improved with regular maintenance exercises. I never really thought about how much we use our hips for stability until THIS happened. But, because all of this happened over several years they diagnosed me in 2006 with PLS. I also have trouble sometimes grsping keys or doorknobs or lifting the coffee pot but it comes and goes.
 

sral

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Thanks DBowman.

My understanding was that rilutek was used mainly in ALS cases and that it only helped to extend life by a few months. Based on it's side effects and the fact that my mom was only showing upper motor neuron damage at the time, we decided against it.

Are you also taking lithium?
 

matthew

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good morning.
My wife had PLS.
We live in Italy. At the moment she takes 450 mg of Lithium a day.
At the moment she hasn't improvements.
mf
 

sand

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Good morning Matthew,
Sorry to hear she hasn't had any improvement so far. How long has she been on Lithium and who put her on it? I am hoping to hear from people who stabilized after taking it. I will be trying it after our long awaited vacation.
Sand
 
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