Old 02-20-2008, 09:38 AM #1 (permalink)
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Like hopingforacure said in the lithuim study post could those who have started on the lithuim keep everyone updated on what is going on. i realize it is early in the study and not sure how long accurate results might take but was wondering if those who are on it could keep us posted.
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Old 02-20-2008, 01:56 PM #2 (permalink)
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Moved this here to keep all the research stuff in one place. Makes it easier to find links etc.
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Old 03-14-2008, 08:10 PM #3 (permalink)
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Not sure how about to go and do spreed sheets but will tell my observations of my husband after a week on Lithium. I believe he is depressed, nauseous, is experiancing high anxiety and experianced diarrhea last night 6 days on the drug. Unfortunatly I think he had high hopes of a miraculous change in his self and instead has gotten weaker and his voice is worse.

Now it has only been a week and he is not on the Riluzole yet and it takes time for the drug to set in.
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Old 03-14-2008, 08:26 PM #4 (permalink)
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givenin, if you go to the website above and select Our Study / Participate it will give you instructions on how to include your husband. It will end up being that you answer some questions sent to you via email and then follow-ups monthly.
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Old 03-15-2008, 08:56 AM #5 (permalink)
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In November of 2007, researchers in Italy announced the results of a
trial using Lithium Carbonate to treat 16 ALS patients, in which they
claimed that progression was significantly slowed, and no patients
died over the 15 month trial period. If the results are verified,
they are unprecedented in ALS research. In fact, previous laboratory
studies have demonstrated that lithium has numerous neuro-protective
properties.

This website has been created to help spread information about lithium
for treatment of ALS, and to gather data from ALS patients choosing to
try or not to try lithium treatments in an attempt to verify the
results of the Italian study.

Last edited by David : 03-18-2008 at 06:59 AM
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Old 03-15-2008, 11:21 PM #6 (permalink)
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Quote:
Originally Posted by givenin View Post
Not sure how about to go and do spreed sheets but will tell my observations of my husband after a week on Lithium. I believe he is depressed, nauseous, is experiancing high anxiety and experianced diarrhea last night 6 days on the drug. Unfortunatly I think he had high hopes of a miraculous change in his self and instead has gotten weaker and his voice is worse.

Now it has only been a week and he is not on the Riluzole yet and it takes time for the drug to set in.
Other than the diarrhea, I doubt the other symptoms are related to lithium. I have prescribed it for over 30 years and have not experienced the side effects he has had. He might have some nausea.

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Old 03-16-2008, 09:18 AM #7 (permalink)
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Although side effects from lithium are rare and normally temporary at the levels we need they still exist and can be serious. It is best to familiarize yourself with the drug and what can happen at places such as: http://www.nlm.nih.gov/medlineplus/d...r/a681039.html and if you have questions call your doctor. Remember that this is an experiment. A year from now they could come back and confirm the Italian study, say there is no improvement or worse yet say it accelerates progression. Every person out there taking lithium needs to be informed and make their own decisions. If you think it is a serious side effect call your doctor. Ok I'll get off my soapbox now
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Old 03-16-2008, 01:23 PM #8 (permalink)
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Never get off the soapbox! All opions are valuable expecially with this new drug being tried and I mean new to ALS PALS. In our case maybe the diarrhea is the only side affect from the Lithium but the others have only started since he started the drug except for the depression it being more pronounced. I have huge concerns about the side affects and have been told they are minor as the drug has been out there for years and I have been told to be very careful and watch closely. It worrys me because the serious side affects are some of the normal side affects just more pronounced. He has declined more in the last week and he is scared but am reminding him he has only been on it about a week and couple of days so we wait and hope.
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Old 03-16-2008, 01:45 PM #9 (permalink)
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Two things, first if it worries you call your doc. He/She makes good money so make sure they earn it. Second, had to get off the soapbox before I got a nose bleed
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Old 03-17-2008, 09:42 AM #10 (permalink)
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The Turtle Never Moves Forward Unless He Sticks His Neck Out . Geo
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Old 03-17-2008, 02:52 PM #11 (permalink)
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LOL, Jeff- I got a chuckle out of that one! Nosebleed indeed!
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Old 07-23-2008, 06:13 PM #12 (permalink)
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My father has been on lithium for two weeks, two 150 mg pills each day. He has been experiencing extreme fatigue. Anyone else experiencing the same?
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Old 07-23-2008, 09:43 PM #13 (permalink)
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I have been on lithium at that same dose for 3 weeks, and I thought the fatigue was partly due to the busy schedule with my 3 boys, working full time, and ALS on top of all that.
The main thing I have noticed is an increase in my saliva production. I think I put on another post that I don't know if that's the lithium or the Rilutek.
I started them both 3 wks ago.
Interesting to know some other views...
Keep the faith,
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Old 07-23-2008, 10:52 PM #14 (permalink)
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Default Lithium not for my PALS

My hubby tried the lithium, and unfortunately was unable to take it. His dosage was only the 150 twice a day. His blood levels were fine. But he started having really bad tremors, and started having a spasm in his throat, they labeled this as a globus sensation or spasm,(hubby described it as a lump in the throat like you get when you are upset that never went away), this affected his food and water intake. He also complained of a gritty or sand sensation in his mouth. Once he was taken off the lithium, those symptoms subsided, unfortunately it was about 2 weeks of misery before they subsided. He is much better now, thank goodness!
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Old 07-24-2008, 10:20 AM #15 (permalink)
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I was mistaken. My father's dosage is two 300 mg pills each day. Anyone else taking that dosage? He also has experienced increased saliva, but he too unsure if it's the Rilutek or the Lithium.
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