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lsmith1162

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Has anyone heard about the new lithium therapy just published for ALS patients? It is a study which was shown to slow the progression of ALS significantly. Just wondering if it would work for PLS patients - has anyone spoken to their doctors about this?

This is the published report: http://www.pnas.org/cgi/reprint/0708022105v1.pdf
 

olly

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i know some plsers who do take this for emotional liability,but there are side effects and it requires regular blood tests for monotoring
 

AHands

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Yes, it does require blood monitoring. The amount you take orally does not simply translate to a blood level--theres a lot of variance. The optimum blood level (.4) for ALS is believed to be significantly lower than the target for mood stabilization, about half i think.

I started on 150mg/day yesterday, will up it to 300mg this weekend, get my blood checked at the lab, and adjust accordingly.
 

Walter

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Lithium

I have PLS. I just took my first 150 mg capsule two hours ago and will increase the dose to 300 mg next week.
Just had to try something instead of just watching myself get worse and doing nothing.
With the relatively low dosage, the potential benefit seems to out weigh the risk of taking the medication.
 

Geo

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Walt Let us know what happens Symptoms, side effects etc etc Geo
 

Walter

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Lithium

Will do.
Already have one side effect that I had expected.
When on lithium one is to increase their fluid intake.
So, with an existing "urgency" problem, my expectations have been fulfilled.:)
 

Whitsend

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Sorry to hear about the 'urgency' problem. I suffer from it also. Boy, I'd hate to have to take something that would make it worse.
 

sand

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Just read your reply about Lithium. So how are you feeling after taking it? Let me know if if helped.
 

sral

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My mom was on it for 6 months and it did not stop progression for her. She tried stopping two weeks ago and had bad withdrawal, i.e. her speech got so slurred it was very difficult to understand her. She is back on a low daily dose of 150mg/day and her speech is better (not as good as before trying to stop).

It would be interesting to see how the progression of PLSers is with lithium as many of the people who have tried it so far have had ALS.

Good luck to you all.
 

jl73

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I'm on lithium, emotional liability I think. I have to get blood tested, but not all that often. I'm not sure what it is doing, but I think it is helpful. Bad things: not to get dehydrated. you will have to pee a lot more, urgency for me, and get thirsty too. no other drugs that could change levels, ibuprofen, etc. I will deal with side effects because I'm pretty sure it might be beneficial.
 

Connie

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03/2008
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Granite Bay
My husband has been on Lithium for over a year now and he has done very well. We have noticed some actual improvement or at least, no progression of his symptoms. Whether that can be attributed to Lithium or not, we don't know but we will keep the Lithium. He has no increased need to urinate or other side effects. We thank God! I also thank all of you for the support we get from you.
 

Micheline

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Sep 23, 2008
Messages
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PALS
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11/2008
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CA
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British Columbia
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Campbell River
I was on Lithium, but the side effects were too much for me. I am wheelchair bound and not beening able to go to the washroom on time was not nice. It pretty much made me house bound. So I decided to go off, my doctor fully understood.
 

Ronelle

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Messages
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Reason
PALS
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07/2008
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SA
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Free State
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Welkom
My Neuro put me on lithium after reading only a paragraph in a newsletter. I had no side affects but kept on getting worse at a fast rate. The MND association of SA send out a letter to all of us informing us that a second, more controlled study with Lithium showed no improvement in PALS. IN fact, it showed deterioration in some PALS. Since Lithium can be very dangerous to the kidneys and can induce coma, I stopped taking it. I still wonder if that was the right thing to do?
 

BLPhill

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PALS
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09/2008
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WA
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I started lithium therapy yesterday, I take 300 mg per day. Made me a little dizzy, they say the side affects should subside within the first month, we will see.
 

BLPhill

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PALS
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09/2008
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dizziness went away, so far no other side effects.
 
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