Lithium and rilutek

[janejane65]

My Mother was diagnosed with ALS in April of this year. She seem to be progressing very quickly. Her neurologist put her on Rilutek with Lithium. I would like to know if anyone has had any results. Also has anyone lost their hair while taking the Lithium. My mother seems to be experiencing this side effect. Thanks

 

[ekm1979]

My Mother was diagnosed with ALS in April of this year. She seem to be progressing very quickly. Her neurologist put her on Rilutek with Lithium. I would like to know if anyone has had any results. Also has anyone lost their hair while taking the Lithium. My mother seems to be experiencing this side effect. Thanks

My mom was diagnosed with ALS a year ago and it has prorgressed very fast as well. HEr symptoms are, losing her voice and swallowing completely. She has a gtube for 2 months now. She has lost 40lbs since diagnosis. She is currently taking rilutek and Lithium separately. I feel like she could do without lithium since she looks so inactive and feels tired all the time. My dad disagrees saying its slowing down her progression. Just 3 months ago she was able to eat soup and milkshakes.. now she cant even swallow water. I get angry thinking it might be the lithium's side effects but I guess we'll never know.

 

[brooksea]

Hi Y'all!

Very sorry about your Moms! Hopefully you will find answers to a lot of your questions on this forum.

No one would probably see results after 3 months of being on Lithium (although my husband has seen minor improvements). Most likely the progression of the disease would stay its course, but results could be seen in 6 months to a year.

ALS causes real fatigue, as the muscles deteriorate and more energy is expended to make up for weakness.

Not being able to swallow is a natural progression as the tongue muscle weakens.

Also- my husband takes Lithium and his hair is not falling out at any faster rate than before. Others may have a different experience.

 

[janejane65]

thanks for input

Thank you for your input. This has got to be the most helpless feeling. It gives me some comfort to be able to come on here and discuss this disease with other care givers and PALS. I am sure I will have many more questions in the future. Once Again thanks.

 

[brendapals]

Hope I picked the right place to post an update on my lithium!

I called my neuro today to see if he had my blood work on the lithium level. They did not, so I faxed it to them. My level at 3 weeks on lithium 150mg twice a day was less than 0.2.

When the nurse called me back, she said my level should be 0.4 to 0.6 based on the Italian study. So he increased me to 150mg in the am and 300mg in the pm. I've now been taking it 5 weeks, I asked my hubby tonight if he thought my speech was worse. He asked me as compared to when, yesterday?

He finally said he thought I was a little more slurred in the last week. Don't know if that was supposed to happen or if something's happening.

I just pretty much have to take each day as it comes, and be thankful when both my feet hit the floor, preferably at the same time!

Keep the faith,
brenda

 

[tmasters]

Brenda,

It took me several adjustments to get to 0.4. I now take a total of 750mg/day, but everyone is different. You need to have your blood drawn every 1-2 weeks until you get there, then less often after your reach the target.

I don't expect to see any changes. I just hope for long-term stability. Lithium is supposed to slow the progression according to the Italian study, from about -0.8 FRS points/month to -0.3. Some have reported improvement but it's hard to say, again everyone is different. In my own case I recall one night about a week after I started, being elated at how well I was walking compared to my usual. But it was probably placebo effect as it didn't last.

People ask me all the time if the Lithium is helping. I think, "Compared to what? Compared to me not taking Lithium?" Well, I haven't run that experiment yet.

I have a prescription for Rilutek but I haven't decided whether to take it. I don't know if the side effects are worth the added 3 months lifespan. I'm more skeptical of this drug as it has so much big money behind it.

Keep hitting the floor with your feet, works better than your head.

Keep the faith,
-Tom