New Lithium based therapy announced

[sharonca]

Great idea, Jeff. I'm #50! Anyone else know there # on the spreadsheet?

Sharonca

[scuba114]

My wife who has ALS started taking lithium carbonate 150mg twice a day. Since starting, her speech and left side motor skills seem worse. In addition she has become very depressed. Has anyone else experienced any negative symptoms?

[AHands]

My doc started me on 150mg x 1/day for three days, then 150mg x 2/day for five days, then blood test. the blood test showed negligible seum Li, so I upped it to 150 x 3/day last Friday. Over the weekend, I felt depressed. I can't say for sure it was the Li, but I was despondant, my hands and neck so very stiff and I just felt useless, incapacitated and didn't see much point in going on. I drank a bottle of wine and went to bed. This morning, I still felt bad physcally, but my spirits were MUCH better. The weather was nice so I went out and exercised. Now I feel terrific! Nobody has listed "depression" as a symptom on the spreadsheet, but I feel like my brief depression may have been a reaction to upping the dosage. I'd ask your Dr about cutting back to 150mg for a few days, then going back to 300mg so that you can better adjust.

[vmd]

AHands:

Apparently, drinking alcohol can change the level of lithium in the blood. You may want to contact your doc regarding alcohol/lithium interaction.

Have you noticed any positive effects due to the lithium yet?

[AHands]

positive effects...around the time i started lithium i developed a problem: you know how when you wake up in the morning the first thing you do is stretch in bed? those stretches were starting to cause my legs to cramp painfully and i'd have to try to remember not to stretch while waking. since lithium, those stretches don't seem to be a problem. i still get painful cramps when doing things like taking off winter clothes, but not durring that morning stretch.

fasics are...different...less i think, but maybe larger? before it seemed like little tiny muscles twitched, now it seems larger muscles jump a bit.

its probably too early to tell--it will be 2 weeks tomorrow. lab test last thursday reported 0.1, but apparently "0.1" means "0.0 - 0.1":


Detection Limit = 0.1
(0.1 indicates None Detected)

[vmd]

Thanks. Are you looking for a 0.2 concentration?

[AHands]

0.4
isn't everybody?

[vmd]

Is that the therapeutic dose for use with ALS patients?

[hopingforcure]

I know that it is so early on in the Lithium study, but I was wondering if we are getting any kind of feeling yet on the outcomes.
I have read the Italian study, and am following the graph that many of the pals on here are on, but wanted opinions from those taking lithium or have info on others taking it.
OH how we hope...

[AHands]

Is that the therapeutic dose for use with ALS patients?

yes. i believe everybody is shooting for 0.4-0.6 or as close to 0.4 as possible without being under. from the italian study:

we found that daily doses of lithium, leading to plasma levels ranging from 0.4 to 0.8 mEq/liter, delay disease progression in human patients affected by ALS.


wondering if we are getting any kind of feeling yet on the outcomes.
You saw mikko's video, right?
http://www.youtube.com/watch?v=210IHwqkdp8

[ilgal]

I too am taking lithium. Started out at 150 mg bid but increased to 3 times a day. On 2/11 blood level was 0.6. On the positive side I have the slightest bit of movement in my right pinkie finger which I previously could not move at all. On the negative, my speech continues to deteriorate and my legs are becoming involved (fascilations and tight muscles). I've not experienced any negative side effects except minimal stomach discomfort when I was in a hurry and didn't take the capsule with food/milk. I am hopeful. I don't think it's hurting me and maybe it will help.

I am also in ceftriaxone trial (med or placbo) and when I told the study people yesterday that I'm taking lithium they said I might not be able to continue. I understand completely and hate to mess up their research, but I may only be getting placebo so... It also wouldn't be bad to get rid of this central catheter.

[disbeliever]

I haven't posted since my initial few back in November regarding my Dad's dx...just been dealing with it, I guess...but since then he has started experiencing weakness in the left arm and hand (started on the right). He has tried a combination of supplements for the past two months, and today went to a specialist and received a prescription for lithium.

The study certainly sounds promising, although from some anecdotes on this thread may not be all the study seemed to promise.

He's still in pretty good shape, considering he's had this for a year now, although the dx wasn't made until November. Similar to others who said you wouldn't pick him out of a crowd as having ALS, though he's slowed down some over the course of the year.

I hope, hope, hope the lithium gives him some more quality time...that's all.

[AHands]

today went to a specialist and received a prescription for lithium

...and an appointment to get his blood lithium and salts levels checked, i hope?

Remember:
the goal is 0.4,
do NOT limit sodium,
do not take any ACE inhibitors.


Is he starting on a low dose and easing up?

when i made the jump from 150mg twice daily to 150mg three times/day, i felt depressed for 48 hours. i do not know for sure that the Li had anything to do with my mood, but i suspect it did. Two days later, I felt fine.

[disbeliever]

Thanks for the reminders and concern!

Yes, he had blood tests run in advance to check his levels. He's seen several doctors throughout this process, including having a thorough analysis at the Cleveland Clinic back in January.

I guess I made it seem like it was a spur of the moment thing in my post..."give me lithium in a vacuum"...but that wasn't the case. This specialist has some other ALS patients on lithium, too.

So he's begun on a low dosage to ease into it.

Thanks again! :)

[stevef]

There is alot of negative reaction from that forum about Lithuim. I truely hope and pray that Lithuim works. This is just one comment about it and I hope ALS reasearch does not get blacklisted becuase there still is hope that a cure or slowing of progression will come.

In my opinion, the greatest take-home message to be had from the Toronto international ALS meeting was made by Frank Walsh of Wyeth, during the (as usual) poorly-attended, closing remarks. He noted that ALS was in danger of being blacklisted, essentially, in the commercial world as a no-go therapeutic development area. That risk that was in proportion to the number of failed clinical trials; crossing such a threshold would be another impediment to therapeutic development that a tough row-to-hoe like ALS just doesn’t need. So, multiple clinical trials on lithium (alone!) and on other poorly pre-clinically validated therapeutics does matter.


John McCarty, PhD
Treatment Investigator,
ALS Therapy Development Institute

[Al]

If there is negative reaction from ALSTDI, could it be sour grapes because their investigators didn't think about it first. Wouldn't be the first time someone has dissed someone elses ideas/work. Although it does surprise me if they in fact did that. I would have thought that research by anyone benefits everyone. Unless they know something about the original study that we don't.
AL.

[westjlittle]

Al,

I reread the posting list and I don't understand where your comment about ALS-TDI is coming from.

Do you honestly believe that the scientists who work for ALS-TDI are negative on Lithium because they didn't think of it?

I went to their ALS conference in November and I found nothing but dedicated experts on our disease. I am sure that every one of them would be happy to find another job if a cure was found.

I also listened to there ALS research conference call last week. They discussed Lithuim and expressed concerns about the mice testing methodology. They are the experts on mice testing for ALS. The key point is as soon as they heard about the research; they wanted more details so that they could duplicate the work.

I fully support ALS-TDI.

Jim West

[Al]

Well I do too but the post above mine by SteveF says different in the title of the post. I DID say I would be surprised if they didn't support someone else's work. Is this jump on AL week? Someone posts a comment. I remark on it and instead of referring to the original post and disputing that you jump on my comments. Boy I'll be glad when this weeks over.
AL.

[Blizna]

Our researchers (Czech - I think with the best members who cooperated on the latest cancer genes breakthrough) some time ago informed about lithium therapy and it was sure that it helps some way in neurological disorders. Unfortunately we do now know how it helps and there are still a lot of side effects and the result is unknown..
But from what I read from ALS patients here, some of them experiments with lithium on their own risk - the important thing is not to overdose, the rest is up to you.

[stevef]

Jim

I in no way meant to bad mouth ALSTDI. I was just wondering why on their forums it seems like a negative reaction about the lithuim. I can understand their concern and there questions about the study. However if people are willing to try it then why not do a study on humans. I have read that test on mice are not as accurate as they have thought so if there are no bad side effects on humans that take it for other reason when under supervision why not try it.

[westjlittle]

I think all of the hesitation to support or say positive things about Lithium are rooted in liability concerns.

No one, especially a doctor or research place like ALS_TDI, is going to say take Lithium until there is conclusive proof. The proof I mean is gather up 10 experts on ALS and ask them "Does Lithium slow ALS?" No one will support it until most of them say "Yes"

Lawyers would love to have a doctor or ALS-TDI come out and say "Take Lithium" then sue if it was proven to be harmful.

Jim

[ZenArcher]

There are two things to look at considering ALS TDI and lithium. First, ALS TDI is a scientific community first and foremost. Their drive is to find a treatment or cure for ALS but they intend to do so in a scientific, repeatable and proven manner. They have established themselves as the leader in mouse trials. Because of all that they are skeptical of anything until proven which is a good thing. The reason they intend to repeat the mouse trial is to see if the Italian results can be duplicated. Before someone says it, I know we aren't worried about curing mice but the scientific community is concerned about repeatability. The second thing to consider is that the forums are populated by many people. Some of them are strongly for lithium, some are strongly against and some are just waiting. ALS TDI has shown interest. If the results didn't intrigue them at some level they wouldn't be spending the money to repeat the tests.

As I've said before for those people that are interested in lithium the Italian study should have been nothing more than a reason to look at lithium. If you are thinking about taking lithium simply because of the Italian study don't bother until the results are verified or refuted at least in the mouse model which should be in the next couple months (I think). Otherwise, do some research or read over the research others have done, speak with your care team and make your own informed decision. Until something is published either supporting or refuting the study discussing/arguing what the study did or didn't do is as pointless as trying to boiling the ocean.

[wright]

Once again Jeff, you hit the nail on the head with your comments. I do have to put my two-cents in, though when it comes to those worried about ethical issues and liability issues with lithium.
Lithium has been used for a very, very, very long time. The doses prescribed in the Italian study are well within (and actually below) the dosages given to people who are bi-polar, for example. If monitored, there are no deliterious effects (for the most part). It's not as if lithium is some unkown drug, not having been approved by the FDA. So in my opinion, I don't see the harm in trying lithium to see what it does. What is the alternative? Riluzole? That has very little effect on slowing the progression of ALS. The other alternative is doing nothing, which certainly isn't going to help. So to take a drug that is approved and well tolerated by those who take it (many people that are on lithium are on lithium for years and years and years) and is proven to be safe, should not raise too many concerns. Now all medications have side-effects, but again, ALL medications have side effects. Does the harm of those side-effects outweigh the potential good lithium can bring? My guess is: yes. Can it be that lithium might turn-out to accelerate ALS or do absolutely nothing? I guess those are possibilities too, but my guess is that most PALS are willing to take that chance. If they are well monitored by their physician, and they find that their condition is worsening, they can certainly stop taking it. I suppose only time will tell with those already taking lithium. Let's all cross our fingers and hope for the best.

[jimercat]

My PALS is No. 111 on spreadsheet!

He's been on Lithium for a week and a half. Tested last Friday and blood level was at .2. He remains on 150mg 2x/day.

Would like to report that upon yawning (you know, the huge ALS yawn) he no longer experiences horrid cramping. Also, he was pecking the keyboard with his left index finger and now has regained some dexterity in left hand. He was able to type emails yesterday faster than I was. (wish you could have seen his face y'all!:mrgreen:) And, when he would try to click the mouse with his left hand (he's a lefty) he would end up pushing the mouse and double/triple click and mess up the whole process. He now has better control.

Here's to HOPE!!! Here's to LITHIUM!!!

[Lorie]

NeuroLogica Blog: Read Realted Information and Feedback on Lithium for ALS

http://www.theness.com/neurologicablog/index.php?p=188


Italy Study:

http://www.pnas.org/cgi/content/abstract/0708022105v1?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=lithium+riluzole&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT


Lorie

[northerngirl]

As luck would have it Mom GP broke her collar bone skiing. I phoned the nurse and she said that here lithium level was .04 and it has to be around 1.25?
That did not sound right so I email the Vancouver ALS clinic and they said she was great that it is suppose to be lower that Bipolar treatment and that is need to be

"Lithium level should be 0.4- 0.8."

[AHands]

lithium level was .04

thats a typo, right?
should be "0.4". I don't think the labs are setup to detect anything less than 0.1.

"Lithium level should be 0.4- 0.8."

yes, though i've seen the target range also given as "0.4 - 0.6". I'd go for as close to 0.4, without being under, as possible.

[Bluenadski]

Dear Nada,

In a message a while back you said: "My mothers neuro was not negative when I mentioned the possibility of starting lithium. He is incidentally the chairman of the MND (ALS for US) association of Scotland. To me - thats enough".
May I ask yo uif he since has prescribed lithium? I'm asking because my husband's neurologist was aaginst prescribing lithium, however when I mentioned what I remembered from your message he bacame interested. So I'm thinking, if your mother's neurologist did end up prescribing it, and if you could possibly passs me his name, this might help persuade our neurologist. Do you think you could help?
Thank you!
Maren

Hi, sorry Maren...

I've been fairly busy for a while and havent visited for some time.

My mothers neuro was not adverse - but could not prescribe lithium carbonate (as per the italian study). Mainly due to additional medication my mother is taking.
I found an alternative in lithium orotate which my mother has now been taking since end Nov/Dec. This is viewed as a mineral supplement by her doctor.
Her daily dose is fairly low - 120g per day to 240g per day - 1-2 tab.

You are unlikely to have LO prescribed, therefore I buy from health stores. Please ask for your doctors advice before trying alternative treatments.

However, I can report fairly good news.
Her last EMG & NCS showed no degeneration to her limbs at all. Her swallowing has remained the same for the last few months as far as the docs can tell. Her speech has slightly deteriorated, however saliva management medication has improved this somewhat. Appearance of bilateral tongue atrophy is slightly more obvious; but overall her progression has been very slow. She is showing absolutely no lower neurone involvement. Initally what docs thought was right limb progression turned out to be a frozen shoulder, whch is being treated and improving weekly. I cannot say whether the additon of lithium has caused this plateau, or maybe we are just truly lucky.
Neuro is still of the impression this is Motor Neurone Disease - but since EMG showed nothing, said he has very little additional evidence to support this.
Neuros will follow up in 8 weeks with further EMG - approx 4.5 months since last to check whether any degeneration is occuring.

In the meantime my mother and I are going to China for stem cell therapy.
Before the forum berate/scoff/bite my head off we have considered everything very carefully.
My mum asked me to find all the possibilities - I did - then showed them to her. I was very sure to show all the pros and cons in association with this treatment, so she has been well informed. This was her decision, and I am happy she made it.

Her docs have been very interested in mapping her progress on her return. I hope the trip provides some evidence to support the treatment.

Thanks :-D

[givenin]

blueadski

I cringe every time I hear of someone going to China for something but I wish you and your Mom the best of luck who knows maybe this time?

[CindyM]

Well, I won't buy my grandchildren toys made from that country due to the lack of consumer protection but I am also interested in hearing how it works out. Very few people report back here on this subject once they have taken the treatment...

[Bluenadski]

Well, I won't buy my grandchildren toys made from that country due to the lack of consumer protection but I am also interested in hearing how it works out. Very few people report back here on this subject once they have taken the treatment...

I will report back whether the report be favourable or not.
It is important that all information be considered - not just the 'happy stories' and I will be more than willing to give an unembroidered account of the trip.

We have decided to go as basically my mother feels its worth trying. Better to be doing something than nothing at all is her motto.

If nothing else, this trip giving her a sense of hope. Thats good enough for me!

Thanks! :)

[CindyM]

Well, it is a trip out of country to a place where many folks would like to travel so since you have the money and don't appear to be setting yourselves up for a disapointment, I quess why not? Unless some sort of harm can come, but then again that is probably just me being cautious...

[AHands]

...I won't buy my grandchildren toys made from that country...

I went to Shanghai las April (not for treatment)--it's an amazing place. I wish I'd traveled more in China. Some parts are beautiful, but not so much Shanghai, at least what I saw, but I was only there a few days. If you pick up souvenirs, I'd get some of those little handmade cages they make for pet crickets. You can probably get a bunch for cheap from a street vendor, and avoid the hustlers pushing fake rolexes, gucci bags and mont blanc pens in the tourist spots. And cricket cages are "real"!

the vendors will often hand you a calculator with a price on the screen. push "clear" and enter no more than half the asking price. they'll feign shock and enter another number...

[rgovardh]

Dear Jeff, Liz, Jamie, Al, Nada,

I am new commer to this thread and read all your comments.

My elder brother aged about 45 years has been diagnosed as MND in May 2005 in India and we have been trying all kinds of local treatments but no improvements are seen as of now. Therefore we are approaching all medical researchers in the world for seeking support with their clinical trails just in case to see if it benefits him for any sort of cure or slow down his disease progress.

After reading all of your comments, I too feel promising to try this Lithium thingy with local doctors supervision if possible. After all of your research on this can you please suggest on what should I start with and how should I move forward on the trial. What is the name of the Lithium based suppliment and can I buy it in the local pharmacy ?

Or do I need to travel to Univ of Pisa where this trials are going along with my Brother ?

Your advice is very much appreciated.

Thanks a lot in advance.

Kind Regards
Rama

[sharonca]

Rama - sorry to hear of your brother's diagnosis. What I did was look at the information on the Italian Study at the international spreadsheet web site. I printed information and took it to my doctor who prescribed the lithium carbonate and now monitors my blood levels. I get this from my general practitioner with the blessing of my neurologist.

Hope this helps.

[ZenArcher]

Rama, lithium comes in 3 forms carbonate, asparate and orotate. Lithium Carbonate is a prescription, asparate I don't know anything about and orotate is available as a supplement. The goal with lithium is to reach and maintain a blood level of 0.4 - 0.8 mmol/l lithium. Doing this on orotate in my experience would be costly. Your brother should discuss lithium as well as the information with either his ALS care team or primary physician and have lithium as well as monthly at a minimum blood tests to check lithium levels. Lithium can be a toxic substance so care must be taken. There is much more information available you'll just have to search for it.

[anthony]

Good Afternoon
Jeff..I wanted to know how the Lithium is going. My Dad was diagnosed with ALS in August and I was wondering how you were doing with the Lithium? And how long have you been taking it?
Please let me know anything you feel I should know.
Thank you
Marcia

[Al]

I've been on it 4 weeks. Went to Neuro yesterday and blood level is too low on 2 capsules per day so they upped it to 3X150mg. No bad side effects to speak of. No cure yet LOL, either.
AL.

[anthony]

Hey Al
Thank you for the response. Where are you at with ALS? Where did it start and when did you get dignosed with it?
Thank you again for your help!

Marcia

[clewbcg]

My husband's sister told him about the Italian study, and he immediately (Jan) went on Lithium. I was against it, but he is getting weekly tests to determine his lithium level as well as checking on other effects. He has been on rilutek since 9/06. We have not seen any slowing, if fact, it seems like the ALS progression has speeded up since then. Also, he is slurring his words much more now. His ALS doctor thinks the slurring is due to the ALS and not the lithium because the lithium dose is so low. His doctor is starting a lithium study but my husband is afraid to stop the doses long enough to qualify for the study. Anyone else on lithium on their own or in a clinical trial?

[rick/Wpg]

I've been on lithium 3 weeks now...like Al I just had my first blood results and am also increasing from 300 to 450mg.per day. The 300mg had produced a blood level of .19 in my case...about 1/2 of where it needs to be. I have had no side effects of any kind but no noticeable results either....here's hoping for all of us tho!!
Rick

[Al]

Anthony if you click on my name by my post and then click view profile it tells most of the story. Up in Gen. Discussion there are links to a story about me.
Rick. My level was .2 so I do 1 in am 2 with dinner.
AL.

[anthony]

Hey Al
Thank you...However it wont let me view your information...I am still trying to work on that!
Marcia (Anthony's Daughter)

[tmasters]

Anthony,

You have to have posted at least 10 times in order to see somebody's profile!

-Tom

[anthony]

Hey Tom
Where are you at with ALS and Lithium? You live in Anaheim? We live in La Mirada.

Thank you
Marcia

[philatm]

Sharon, I'm glad you're on the Survey spreadsheet. It appears things have been stable for you for a couple of months. I just joined the forem and started Lithum 4 days ago. I'm #180 on the spreadsheet. The more folks willing to post their experience the more we will all know if this is working. I think the spreadsheet shows alot of hope

[anthony]

How do I add my Dad to the spreedsheet? We just started him on Lithium?

Thank u
Marcia

[sharonca]

In an effort for full disclosure... I am still stable and in fact had regression in symptoms in my hands and mouth. I have stayed the same since a week after I started Lithium. And I am holding at .4. I will say that I am weaker in my legs though. I don't know if it is because my legs have shrunk considerably or what. Rising from a chair or unfortunately from a toilet is really hard and I could do that with ease two months ago. But I'm happy with the hands and mouth issues. No cramping and no fasciliations in either place. I guess what I'm saying is that I don't feel I have had a progression of symptoms to new body parts. And any slowing or regression is a good thing.

Sharonca #50

[anthony]

Is anyone experiencing back pain? or have you and now you dont? My dad has just started to experience this is the last few weeks..Please let me know

Marcia

[sharonca]

Anthony - no I don't know about back pain but someone here I'm sure will have an answer for you. I'd suggest goggling alslithium - all one word - and you'll find the spreadsheet. Good luck on the lithium for your dad.

Sharonca

[tmasters]

Hi Marcia (neighbor),

(sorry for calling you anthony, that's apparently your dad)

I started Lithium on March 31, and just got added to the spreadsheet #179. I have no official dx yet. My neuro called it MND, but I only have LMN signs. Dr. Graves (UCLA) said I don't "qualify" for ALS (yet). Cool, huh? But he said he is "very suspicious" that ALS will be my eventual dx.

I wanted to be proactive so I talked to my GP and he agreed to start me on Lithium. It's supposed to be safe especially at the dosages we use, it just requires careful monitoring of blood levels and kidney function.

I have no back pain. Just the twitching and cramps if I'm not careful to take it easy. I was laying tile on the bathroom floor Saturday and all of a sudden I'm jumping around in fits because everything started cramping up at once! Made me laugh when it was over how funny I must have looked.

-Tom #179

[anthony]

Hey Tom
For Cramping my Dad drinks 2 8oz of Tonic Water a day and that has gotten ride of it.
Give it a try!!

Marcia

[patricia1]

Hi I am curious, Being in the medical field I have seen alot of people on Lithuim and they have involitary movements They have twitching tongue movements and just act very strange. I was wondering do any of you have these side effects from the Lithium.

Thnks Pat

[tmasters]

Hey Tom
For Cramping my Dad drinks 2 8oz of Tonic Water a day and that has gotten ride of it.
Give it a try!!

Marcia

Marcia,

Thanks. Somebody suggested that before and I WAS drinking the tonic water (and it seemed to help). But I stopped the tonic water when I started on the Lithium. Just being cautious.

Does anyone know if there is any drug interaction between Lithium and Quinine?

-Tom

[AHands]

...They have twitching tongue movements and just act very strange...

hey, thanks for the reminder that lithium can increase fasciculations. i was just looking at my left arm this morning and observing how the twitches are much larger and less brisk than before. i think they used to be small, sharp, sudden jumps and now its larger motions, more like muscles flexing, like my bicep is pregnant with children inside kicking around.

one day, a couple weeks ago, i started having fasciculations in one ear. very annoying, it sounded like an insect was crawling around in there. other people could hear it if they pressed their ear against mine. worried that i wouldn't be able to sleep, i applied some "swimmer's ear" drops and the fasciculations stopped.

what sort of "acting strange" have you observed?

[anthony]

tom

do u think my dad should stop drinking tonix water? were u told not too?

marcia

[patricia1]

hey, thanks for the reminder that lithium can increase fasciculations. i was just looking at my left arm this morning and observing how the twitches are much larger and less brisk than before. i think they used to be small, sharp, sudden jumps and now its larger motions, more like muscles flexing, like my bicep is pregnant with children inside kicking around.

one day, a couple weeks ago, i started having fasciculations in one ear. very annoying, it sounded like an insect was crawling around in there. other people could hear it if they pressed their ear against mine. worried that i wouldn't be able to sleep, i applied some "swimmer's ear" drops and the fasciculations stopped.

what sort of "acting strange" have you observed?

I am not on lithium and have all those symptoms

I was asking if anyone on the drug acting weirded ,it is a bypolar drug so it has to be doing something .

Like I said I have seen people on the drug and they have uncontroled movements. I wanted to know what I can expect if I go on it. Thanks Pat

[liz]

Hey Pat -

Working in the mental health field, I have also observed many people who take lithium. More often than not, those who displayed uncontrolled movements were also taking heavy-duty neuroleptics which were causing tardive dyskinesia. When we observed people going toxic on lithium, the two most prominent symptoms were a sharp increase in tremors and early signs of delirium. Since lithium works to stabilize moods, if your mood is already stable you shouldn't normally notice much difference.

Liz

[AHands]

I wanted to know what I can expect if I go on it. Thanks Pat

Of course, I have no way of knowing if my observed changes had anything to do with the Lithium.

[AHands]

do u think my dad should stop drinking tonix water? were u told not too?

if tonic water is helping his cramps, i'd stick with it. why not--is he having trouble reaching the 0.4 blood level for lithium?

[Vicki S]

I've been on Lithium for a month now. I started with 300 mg my blood was .2 so then my doctor upped to 450 mg and blood was .3. Now I'm on 600 mg. I've had no side effects. Today I have a sore throat. Have to check and see if that's a side effect.

Vicki S

[patricia1]

Thanks Liz

Are You On Lithium Yet?. I May Try It. I Just Dont See Any Real Promise From Anyone On This Forum. I Also Am Surprised It Didnt Hit The Media Yet If Its So Great.
But Maybe One Person May Get Something Out Of It And Someone May Not. I Feel Better With The Coq 10 And Others Dont. So Every One Reacts Differently To Different Thinks I Have Seen That In The Medical Field..one Persons Medicene Can Be Anohers Ones Poison.

Take Care Liz Pat

[patricia1]

I've been on Lithium for a month now. I started with 300 mg my blood was .2 so then my doctor upped to 450 mg and blood was .3. Now I'm on 600 mg. I've had no side effects. Today I have a sore throat. Have to check and see if that's a side effect.

Vicki S

DO YOU THINK ITS WORKING YET PAT1

[Vicki S]

Hi Pat, so far my ALS is in my ankles and lower limbs. I don't think Lithium can fix drop foot and balance which are my two symptons. I'll be happy if it stops the progression right here. I know I'll never walk again because of my balance issues. I fall backwards when I stand up.

Vicki S.:-D

[sharonca]

Vicki - I too have ankle and leg onset. I was falling alot until I got my AFOs. I've posted a lot about how much I love those. As for Lithium I've posted about my lack of progression here also. It has worked for me. It has not stopped the weakness in my legs and ankles but has stopped in my mouth and hands. Even if it stopped the progression in those areas for two only months then that is great. My voice is back to normal also. I'm trying to keep my life stress free and take Lithium in an exact schedule.

Sharonca

[anthony]

My Dad just started taking Lithium a few days ago. He will have his first blood test in 2 weeks.
Do you recommend trying to take Lithium at the same time everyday (like birth control)??

Also is anyone doing the ALS walk in Loma Linda California on April 27? or is anyone going to the ALS convention?

I also want to thank everyone for writting back to all my questions and really helping me out! This is diseases is alot to handle!!

Thank you & God Bless
Marcia

[patricia1]

I've been on it 4 weeks. Went to Neuro yesterday and blood level is too low on 2 capsules per day so they upped it to 3X150mg. No bad side effects to speak of. No cure yet LOL, either.
AL.

HI Al
Which Lithium are you on They have Lithium salts and carbonate Are you being followed by a GP or Neuro
Thanks Pat

[liz]

I just started lithium last week. I think it's going to be a couple years before we have really good information on the efficacy of lithium. Staff at our local research clinic told me it will be about 9 to 12 months until the start of clinical trials. Then we'll have to wait for results. I decided I didn't want to wait for the FDA to do their thing and was willing to take the risk of doing this off label. If it doesn't work out, I don't think I will have lost much.

[Al]

I'm on the Lithium carbonate 150mg with breakfast and now 300 at dinner. Being followed by my Neuro and he says try to take Lit. same time each day. 5 weeks yesterday. No cure yet. LOL.
AL.

[sharonca]

Marcia -

I didn't know about the walk in Loma Linda on the 27th. Boy am I out of it. I will be at the support group tomorrow at Loma Linda and will ask about it then.

It is critical for me to take lithium at the same time every day - evenly spaced throughout the day. I do 150mg at 10pm, 6am and 2pm. And I have my blood drawn at exactly 2pm. And I'm holding at .4.

Sharonca

[cajuntexusa]

I sent my doctor an email along with some info presented here and he says...

Mrs. Peer:

Thanks for your note. Vanderbilt has been asked to participate in a very large USA trial of Lithium as a treatment of ALS. It will be research into whether Lithium really works and I prefer this type of trial as it proves or disproves whether the medication is useful to treat ALS. The Italian study only looked at a few patients; not enought to prove that Lithium truly is useful for slowing the progression of ALS. We should be initiating the trial by mid or late summer. I would prefer that Charles and you wait until he can be recruited into the clinical research trial.

so we wait patiently.

Please keep posting your results as my husband reads everything here.

Thanks,
Aleta

[anthony]

My Dads doctor said the same thing but after we noticed his speak was being affective we said what do we have to loss...so we got it for him anyways...

Lv Marcia

[clewbcg]

My husband has been on lithiun since February. He also takes rilutek (since 9/2006) and clinical test levels of CoQ10 (since 4/2007). He is now up to 900mg a day of lithium. 300mg 3x a day. He is monitored weekly by blood test and by his gp. He has had alot of trouble keeping his level at .4. The University of Utah clinic where we go is starting a lithium trial in June, but my husband doesn't want to stop taking it for the next month so that he will be eligible for the trial. He's afraid he'll lose too much in that month. He has slow progression ALS but since starting the lithium, has lost alot of strength in his hands. Also, he slurs his speech alot. I'm worried about the toxicity of lithium as well as drug interactions, but am afraid to try and convince him to go off of it. His neuro thinks the slurring is the ALS, not the lithium. Anyone else slurring alot on lithium?

[jimercat]

clew,

It's the bulbar symptoms causing the slurring. The tongue muscle is becoming weak. Sorry, don't think it is the Lithium causing the slurring. Your Neuro is probably right.

Good Luck!

[anthony]

Do anyone notice once you are taking lithium you are more tired?

Marcia