View Full Version : lithuim updates
stevef
02-20-2008, 08:38 AM
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.
Moved this here to keep all the research stuff in one place. Makes it easier to find links etc.
AL.
givenin
03-14-2008, 07:10 PM
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.
ZenArcher
03-14-2008, 07:26 PM
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.
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.
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.
Mark
ZenArcher
03-16-2008, 08:18 AM
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/druginfo/medmaster/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 :)
givenin
03-16-2008, 12:23 PM
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.
ZenArcher
03-16-2008, 12:45 PM
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 :)
The Turtle Never Moves Forward Unless He Sticks His Neck Out . Geo
CindyM
03-17-2008, 01:52 PM
LOL, Jeff- I got a chuckle out of that one! Nosebleed indeed! :-D
oc gal
07-23-2008, 05:13 PM
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?
brendapals
07-23-2008, 08:43 PM
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,
brenda
gimpydad'slady
07-23-2008, 09:52 PM
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!
oc gal
07-24-2008, 09:20 AM
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.
I'd bet the Lithium. Most haven't reported excess saliva with Rilutek but there could be a drug interaction going on.
AL.
Isn't buildup of saliva in the mouth also caused by swallowing problems due to ALS? It's very difficult to sort out all these symptoms, figure out what's causing them, and then decide what to do about it.
BethU
07-24-2008, 03:06 PM
Liz, I think you're right about the build-up of saliva. I was told by one neuro that normally we swallow frequently without thinking, but with bulbar problems, you don't swallow as often, and thus it feels like you are salivating more because you have more "juice" in your mouth and you have to think about swallowing.
But you also do salivate more, too, sometimes. When I swallow a Rilutek pill, the hydrant starts, and I fold up a paper towel into a thick pad, and stuff it in my mouth and bite down on it for about 5 minutes till the hydrant shuts off again. Sometimes it takes me two or three paper towels to absorb it all. There is something about that bitter little pill that turns the faucet on, but the effect is over in 5 minutes. Some other pills with bitter coatings have the same effect.
BethU
Jennifer51
07-25-2008, 07:24 AM
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.
I have just returned from Barts Hospital in London where a new MND clinic has been set up with some funding from the mnd association...bless them....and one of the doctors, who I saw, is a lovely italian neuro... after my assessment, I asked him about the Lithium trials in Italy. He was not too hopefull, but told me that he is going over to italy in a couple of weeks and will be getting together with the doctors and patients in the trial, so he will report back to me when I see him again in september...BUT word of caution to any Brits on this site....Lithium is NOT licensed for use in the UK or Italy for mnd...there are no trials pending for it in the UK...but who knows...
bit dissappointing.... Jennifer51
oc gal
08-29-2008, 11:22 AM
My father has been on lithium for seven weeks and one thing we have noticed is that his bottom lip which was sagging quite a bit seems to have gotten better. Small change, but at least something. He was initially quite fatigued from the lithium but his body seems to have adapted and is doing pretty well. His other symptoms (he has bulbar onset) haven't gotten any better, in fact, have gotten slightly worse, but the lip is something at least!
