New Lithium based therapy announced

[ilgal]

I don't understand why anyone is willing to wait to be in a trial of lithium. If you are in the trial you may be assigned to the placebo group and not even get lithium. It's available, it's safe based on bi-polar patients taking it at higher doses, and it MAY help.
I have been taking lithium for almost 3 months. I haven't had side effects except upset stomach if not careful to take with food. I'm not getting better, which I didn't expect. Some symptoms are getting worse but maybe at a slower rate--???? So I'm not saying it's a miracle drug for ALS, but if you're hopeful about it don't wait to be in a study.

[tmasters]

so we wait patiently.


Aleta,

I totally agree with ilgal (and well stated!). Lithium is safe, and it MAY help.

Your doctor is being very selfish by asking your husband to wait 4 months. In the end it is your decision not your doctor's. I went to my regular GP and he wrote a prescription for me. If he had refused, I would have found another doctor.

Best of luck on what you decide to do.

-Tom

[cajuntexusa]

Thanks Tom & ilgal,

We are trying very hard to comply with our neurologist. I will talk to my GP and see if we can get the prescription for it. I don't understand why we should wait. The disease is not waiting.

Aleta

[LesliePettie]

Hello everyone;

My husband, Tom, was diagnosed with ALS in Feb 08. We started to notice slurring in his speech and difficulty swallowing in Feb 07.

Tom is taking 100mg of Riluzole (since the 4th week of March.) and now Lithium @ 300mg, since April 1. Last week our physican upped the dosage to 450mg because his blood level was only .2

Our Neurologists at the ALS clinic did not want to prescribe Lithium for Tom. They wanted us to wait for the clinical trials. Of course there would be no assurance that we would be prescribed Lithium and not the placebo. We felt that Tom does not have time to wait and we certainly do not want a placebo. What can he lose by trying it? We went to our family physican with all of the research documents and testimonials from ALS doctors around the world and he prescribed lithium for us right away.

Until Tom started with the lithium it was almost impossible to understand anything he said but now not only can I understand him but our friends can too. And he has told me that for the first time in a long time he can swallow properly.

It is the Lithium?? Only the 'powers that be' know for sure. Lithium may not be the cure all but for the first time we actually have some hope. So far, there have been no ill effects from the lithium, except that he is a bit sleeply after taking a dose.

If there are other PALS out there thinking of trying lithium I would encourage you to get to your family doctor as quickly as possible.

Leslie

[sharonca]

Thanks for the info Leslie. I, too, am on Lithium and am holding at .4 for a while. I take 450mg on a strict schedule. And am having weakness in my legs but that is where it started for me. The other areas that were starting to be affected have stopped. I'm happy with my lack of progress. I can't prove it is lithium doing this but I'm not going to stop taking it.

Sharonca

[wirky]

Hello everyone;

My husband, Tom, was diagnosed with ALS in Feb 08. We started to notice slurring in his speech and difficulty swallowing in Feb 07.

Tom is taking 100mg of Riluzole (since the 4th week of March.) and now Lithium @ 300mg, since April 1. Last week our physican upped the dosage to 450mg because his blood level was only .2

Our Neurologists at the ALS clinic did not want to prescribe Lithium for Tom. They wanted us to wait for the clinical trials. Of course there would be no assurance that we would be prescribed Lithium and not the placebo. We felt that Tom does not have time to wait and we certainly do not want a placebo. What can he lose by trying it? We went to our family physican with all of the research documents and testimonials from ALS doctors around the world and he prescribed lithium for us right away.

Until Tom started with the lithium it was almost impossible to understand anything he said but now not only can I understand him but our friends can too. And he has told me that for the first time in a long time he can swallow properly.

It is the Lithium?? Only the 'powers that be' know for sure. Lithium may not be the cure all but for the first time we actually have some hope. So far, there have been no ill effects from the lithium, except that he is a bit sleeply after taking a dose.

If there are other PALS out there thinking of trying lithium I would encourage you to get to your family doctor as quickly as possible.

Leslie
HI ALL
I have never used a forum platform; I am new so I do not know if my reply will be posted to all or just to Leslie - here goes.

My mother has been diagnosed with MND with Bulbar palsy (the neurologists tell me we do not use the term ALS in Australia) I say to them that not calling it ALS here dose not stop people from getting it.
Leslie's story sound just like ours. Lots of B.S. and wasting time by the Neurologists ( 3 of them).
No one can understand her speech for at least 6 months and we are shuffled around between professors but no real action. I think this is a typical story in this day and age.

I am all charged up and going to push the local GP to prescribe without the neurologist.

I want to know if all those who are taking Lithium are you all referring only to "Lithium carbonate" and no other forms of Lithium ?
Is 150 mg Lithium carbonate a good place to start and build up from there ??

Wirky

[Kevinski]

Hi Kevin in Calgary i have been followed by a top notch neurologist at the foothills hospital in Calgary specializing in ALS.I was Dx in June 07.My neurologist is the original doubting thomas in regards to new treatments and is very hestitant to recommend new kinds of treatments,I was going to do a memantine study,but my neuro guy said this new lithium therapy is the most promising new developement he has ever seen.He said if he had ALS he would be on the Lithium,so he has me mirroring the italian study 150mg Of Lithium twice a day and the ritulek twice a day.I have been on this regime for two months.I feel i have more energy and there have been no developement in the disease.I guess i am lucky because so far its only my speech which has been affected ,is toast now.But as far as I am concerned if this Litium and ritulek combo will keep me walking and moving and doing the things I like and slow the progression of the disease ,this new developement is a god send as far as I am concerned.Not telling anyone what to do ,but it has been good for me.So who ever is thinking about this talk to there specialist and get there opinion and go from there.To me my neurologist who i respect said if he had als he would be on the lithium that was good enough for me to start the drug,take care evryone Kevin

[clewbcg]

Hi wirky and all,
My husband (dx 2006) has been taking lithium since February. His dosage has gone from 150mg 2x a day to 300mg 3x a day. The key to taking the lithium is having weekly blood tests to make sure the blood level of lithium is at least .4. Your dosage is based on achieving this level. His internist prescribes the lithium and monitors the blood tests. He is not eligible to be in a lithium trial starting in May at the University of Utah ALS clinic because he is already taking it, and they want everyone to be lithium "virgins" when the test starts. At first, they said he could go off a month before the trial to be eligible, but now that has changed. This may be a good reason to wait to start taking it until you can be included in a trial if your progression is slow. UofU's trial will not have placebos (I don't think). You have to take prescription lithium, the health store kind is not strong enough or the right kind.
We have not seen any slowing of progression from the lithium. In fact, his progression, which was very slow, has speeded up alot since he started taking the lithium. He also slurs his speech very badly now which the doctors think is the result of AlS not the lithium since, according to his doctors, you don't see sluring with lithium until much higher doses. Anyway, I'm afraid that any change in progression for people taking various things is just a matter of where they were before they started. In our case, I think we were at a plateau stage, and the lithium didn't change anything. We remain hopeful, but this sudden speed up is really scary. My husband also takes rilutek and will continue the lithium. He just stopped the massive doses of CoQ10 because of the results of the recent trials. My belief is that you should be able to take pretty much whatever you want after a diagnosis of ALS and our physicians have supported us fully.
Hope this info is helpful.

[clewbcg]

I just wanted to add that it is really important to get your blood tested since lithium affects the liver (as does rilutek). Also, there are many foods and drugs that can make your absorption of lithium both more or less. The Italian study was based upon lithium at certain levels in the blood stream, so I also don't think you should just take it without being monitored. Hope this helps too.

[Neph]

I've read several times that you shouldn't take lithium if the ALS is progressing slowly.
The doctors couldn't say whether it's progressing slowly or not.
The first symptoms showed up about four years ago, problems with one foot/leg, but my mum seemed to have a sort of 'attack' last fall, along with thyroid problems. Her speech all of a sudden became worse, and her muscles. She lost weight quickly.
Since then she hasn't lost any weight anymore. She's got problems walking and speaking, but we couldn't notice any deterioration since November.
Her doc wants to give her lithium now, the question is whether she should take it.
Waiting for medications like AX200/201 could be very long.

all the best to all of you
Neph

[AHands]

I've read several times that you shouldn't take lithium if the ALS is progressing slowly.

Really? Where? I don't recall reading that.

[bmb3641]

i have been taking lithium 600mg a day plus rilutek together for over a month. seems to
help at a low dosage. had me taking 900mg a day and it seem to make my muscle fasiculations worse

[AHands]

i upped mine to 900mg last week
tying to get my serum up to 0.4, but seem stuck at 0.2
did you get to 0.4 before backing down?

[bmb3641]

no i'm stuck at .36 or so. but there going to keep me there for awhile. not fully diagnosed with als yet. its between 3 different things. only 29 so that stumps the doctors. going on 2yrs of symptoms and different treatments.

[AHands]

what are those other two possible diagnosis/

i'm 44yo and have had this over three years, and still no positive diagnosis, though if there are alternative possibilities, they've not told me. its just als, or...some mystery weirdness. i think they're hesitant to call it als because its progressed slowly, though they say "its looking more and more like als". they did put me on rilutek, as they did you.

[bmb3641]

multifocal motor neuropathy, monomelic amyotrophy. multifocal was my first dig. i did 7months of ivig treatments didn't work. so they were going to try cytoxan went for second opinion in seattle and got the als or mono dig.

[Al]

I did 6 months Cytoxan which did no good and that was after terrible reaction to first round of ivigg. But it's worth a shot. Better to try something as long as it's not some quack pushing it.
AL.

[AHands]

When my troubles were initially confined mostly to the left arm, one neuro suggested MMA, but the ALS specialist said I was too old for MMA (44). I guess he was right, because after a couple years it has spread to the right arm, left leg, neck, etc...

MMA mostly affects Indian and Japanese guys, iirc...

[patricia1]

Before I go on Lithium

I would love to hear some feedback from anyone on Lithium.thanks


Pat 1

[Mark]

Hi Pat,

I have been on lithium about three months for a variant of PMA. It is hard to tell whether the progression slowed. I have had some further progression but have no good way to measure the rate of progression before and after. I also had hernia surgery about five weeks ago and reportedly any surgery could hasten decline. I have noticed, as others have reported, some increased situations. I have some tolerable gastrointestinal symptoms which could be related to lithium. Given the limited treatment options and the fact that lithium is known to be neuroprotective I will continue it for now. What is happening with you in this regard?

Mark

[Lorie]

RESEARCH NEWS

ALS Research Findings

MDA supports first U.S. trial of lithium in ALS

An MDA-supported clinical trial of lithium carbonate, a medication commonly used to treat bipolar disorder, is set to begin in people with ALS, following reports that the drug may dramatically slow the progression of this devastating disease.

MDA's clinical trial is an effort to confirm or refute the findings of a recent Italian trial conducted by Francesco Fornai at the University of Pisa (Italy) and colleagues at other Italian institutions. The Italian trial showed that lithium significantly delayed ALS progression compared to standard treatment alone.

The 12-month MDA-supported trial will enroll 100 participants at 10 sites around the United States. Principal investigator is neurologist Robert Miller, director of the Forbes Norris MDA/ALS Research Center at California Pacific Medical Center in San Francisco.

"The results from the Italian study were the most important and positive ever reported for ALS," Miller said. "We really need to know that it's real, and this study should give us that answer.

[vmd]

Any recent news on the lithium front?

[Mand406]

Wondering if anyone has heard of or done research on Dr. Alexsander Strande??He claimsto me that my almost 100% sure symptoms of ALS have been turned around completely,Have any of you heard of him??

[ZenArcher]

Ask him for proof. Ask him to speak with any of the ALS patients he has helped. Ask him for any published information on his treatment showing efficacy. There are hundreds of these people out there claiming all sorts of things but none have actually done it. Its been said before but I'll say it again. The second some treatment or therapy shows that it works in even the slightest everyone out there will know about it. Every ALS clinic will be talking about. Every web page will be talking about it. In my opinion this guy is just like the rest. You'll spend your money for nothing.

[CindyM]

Thank you, Jeff. This message cannot be said often enough since we continue to get new members and new visitors every day. People searching older threads will note this warning but it doesn't hurt to give a reminder every now and then.

[Mand406]

Are there any other conditions that effct both upper ad lower motor neurons besides ALS?

[Al]

In reference to Lithium, I have quit taking it as I felt that after almost 3 months my symptoms are much worse and the side effects were quite bothersome. I was at the Sunnybrook Hospital Symposium on ALS Fri. and talked with 2 others that had done the same.
AL.

[hboyajian]

I'm sorry to hear the Lithium was not helping you Al, and that your condition has worsened. There is always the factor of how a medication affects your quality of life with side effects in addition to the question about if it is making any difference regarding the primary illness. Sounds like there were negatives for you in both of these categories. Take care.

I am glad to hear that a larger study is being done in the US (Lorie's post) to gain more information about the actual effectiveness of the medication. I hope it is a well designed research project that has careful controls and enough participants included to provide some answers. However, there are so many variables that this might not really be possible with just one more study.

[patricia1]

So far I see no one improving on Lithium. More empty promises.I wish someone would prove me wrong.


Pat1

[Sunloving Sue]

You people who aren't having very good luck with lithium, are you finding your appetite is almost nil. My husband has been on it for 10 weeks. He too is getting weaker since starting it and considering quitting it. One of the problems is no appetite and more weight loss. Asking if this is a common problem. He was dx in Nov. 06.

[Al]

There is also a cross Canada study going to be done in about a dozen clinics. They are looking to start in Nov. if I recall correctly. My appetite has been less as well.
AL.

[checkmat2]

has anyone got rashes with als.....my husband has developed a rash.....we do live in the country so it could be poison oaks.....that might of got on the dogs fur.....just asking.

love ya all
Christina

[patricia1]

I dont think the rash is from ALS you cant blame everything on ALS. There is so many reasons for rashes Drugs detergents plants outside bugs use some cortisone creme it will go away if not see a dermatologist Pat

[bmb3641]

have been on lithium for about 3-4 months now and have had no side affects. i can't decide if its helping yet the only difference is i twitch less at night or that's what my wife is telling me

[Farmgal from ND]

I was wondering if taking good supplements can help at all ? Al mentioned hes trying some, does this seem to be something to look at and getting into more of the supplements ? I was also going to ask anyone about a MDA clinic, I am going to one in a week and was wondering if they tell you where you are as far as your ALS or is it just a bunch of tests ? Thanks for the info.

[popfrank52]

I tried lithium for 2 months. My appetite went south. Nothing interested me as far as food was concerned. As soon as I stopped(24 hours) my appetite returned big time.
It appears that it's just like the disease. Works differant on differant people.

[PDaddy]

FWIW My doc suggested I take vitamin E, C, Selenium, and Centrum Silver multivitamin. Don't know if it's helpin' but I feel great!

[Al]

I felt better on COQ 10, vit E, vit C and creatine powder. Think I'll go back to that.
AL.

[checkmat2]

He is going to see our family doctor on Tuesday.......




I dont think the rash is from ALS you cant blame everything on ALS. There is so many reasons for rashes Drugs detergents plants outside bugs use some cortisone creme it will go away if not see a dermatologist Pat

[checkmat2]

I have noticed my PALS getting really bad aniexty attacks, like when he needs to get in the car, the bathroom really scares him and then to get in bed, is that common? Help!

Christina

[Al]

A lot of people get anxiety and also panic attacks. I find Ativan helps. Maybe ask the doc about it.
AL.

[oc gal]

My father is on Lithium and was given a scrip for two 300 mg pills/day. He was also told we are looking for a blood level of 1.6. The dosage and the target level really seem to be in conflict with what everyone else is saying here. Anyone have any ideas?

[Al]

Are you getting this from a GP, Neuro or an ALS Clinic? Most people I've heard of start with 150mg twice a day and then have blood checked.

Al.

[Jennifer51]

A new lithium (http://www.alsforums.com/definitions/lithium-als.html) based therapy for ALS was announced recently at a conference in Rome. The release is in Italian at:
http://www.diregiovani.it/gw/producer/dettaglio.aspx?id_doc=5490

I ran it through Google translator to English and then took a stab at editing the very rough output to make it more readable. I speak no Italian so my interpretation may be faulty. Results follow:

(SAY) Rome, 8 November. A new therapy can slow down the progress of ALS through the use of drugs based on lithium salts. The development team is composed of Italian scholars and researchers of Santa Lucia di Roma, Neuromed and the University of Pisa.

The news was given today during the 34th meeting of the Italian League for the Fight Against Parkinson's Disease by the same scholars, who, for 15 months, have applied the new therapy on a group of 16 patients. "In total- says Francis Bakeries, a researcher at the University of Pisa, one of the authors- the project involved 48 [ALS] patients for a period of 15 months: 16 took lithium salts with riluzole, the other 32 only riluzole" . After testing 15 months researchers have found a mortality rate of zero on patients treated with lithium salts. "The patients -explains Fornai- had been diagnosed with ALS already for a year and a high percentage had the most aggressive form of the disease,i.e. bulbar". In the other 32 patients, however, the rate of mortality "was 30%". In patients treated with lithium, then, "there was not any significant progression- continues Fornai- while in others there has been a decline of 50% in the first 3 months.
Patients were recruited from the Mediterranean neurological and neurological clinic in Pisa. The treatment is based on the following principle: the lithium could accelerate the removal mechanisms of protein and altered mitochondria and promote the genesis of new mitochondria. Another 100 patients are currently under care in a further study of the drug. Researchers will recruit others while awaiting the publication of the first results. "With this therapy is given a hope to the ill- Stefano Ruggieri, Neuromed- thanks to a drug that, among other things, costs very little."

I havent had time to look at the link, and my husband is of italian decent so we understand some italian....HOWEVER, last week I went to see an Italian Neuro in Barts (one of the oldest London hospitals) and I asked him about the lithium trials in Italy. He did not hold out much hope for them...BUT he is off to visit the doctors and patients actually involved in the study during August, and he is going to report back to me when I see him in early september...so watch this spot...right from the horses mouth as it were. He also told me that Lithium is NOT licensed for use in MND in Italy or the UK at the moment, so us europeans cant take it any way. HOWEVER there was something on our breakfast tv this morning, just generally talking about healthy eating, and they said that everyone should be eating LITHIUM rich foods...maybe that is a way of getting some of it in us without the side effects of the drug.. Must be worth investigating
Jennifer51

[oc gal]

This is from a neuro. He went in to have his blood checked after two weeks and his level was .3. He was instructed to continue the 600 mg and get his blood checked again in two more weeks. Her target for him is 1.6 which seems exceptionally high according to everything else I've been reading. Any ideas?

[sharonca]

The target level for ALS is .4. You can look at the international spreadsheet and find info there. alslithium.atspace.com

The 1.6 level is for bi-polar I think.

Sharonca

[ZenArcher]

1.2 mEq/l is the highest level recommended for bipolar patients. I'd check that number again and make sure. The FDA page on lithium has the following:

Adverse reactions may be encountered at serum Lithium concentrations below 1.5 mEq/L. Mild to moderate adverse reactions may occur at concentrations from 1.5 to 2.5 mEq/L, and moderate to severe reactions may be seen at concentrations from 2 mEq/L and above.

I would be extremely careful and ask for some very strong reasoning before letting them take you even to 1.0 let alone 1.6.

[Rhonda Kim]

Are you getting this from a GP, Neuro or an ALS Clinic? Most people I've heard of start with 150mg twice a day and then have blood checked.

Al.
My husband is on 300 mg twice a day. I don't know what his level is yet but the nurse at the Dr's office said it was ion the low side. The Dr did say when he gave it to him that he didn't what to give him to much. I have a friend that takes lithium because she is Bi Polar she takes 900mg a day. She has been on that amount for years. We have a good friend that is a neuro phycologist she say lithium protects the nourons and if a bi polor person takes it they don't get Alzimers. I beleive it will help. How much we will have to wait and see. It is a safe drug. Its been in use for 40 years. Good Luck!

[oc gal]

I talked with the nurse yesterday and he said they are looking for a level of .6 - 1.2. I quoted the Italian study ranges to him. It sounds like the doctor is looking for Bi-Polar type levels to me. He said something about different labs measure these levels differently and assured me it's the same as in the Italian study. We have an appointment in two weeks so hopefully we can get to the bottom of this then. Anyone else run into this?

[ZenArcher]

I haven't but I question his statement that levels are measured differently. Lithium levels, at least to my limited knowledge, are measured as mmol/l or mEq/l. Using either of those measurements the desired range according to the Italian study was 0.4 - 0.8. I'm not saying 1.2 is necessarily bad however it is higher than what was required. I'd just ask the questions.

[brendapals]

Hey folks,

I just got my first lab value back and it was <0.2 mEq/L. I have faxed it to my neuro, waiting to see if I have to do anything different. I am currently on 150mg twice a day.

About all the difference I can see is my saliva is increased, my urine output is increased and my slurred speech is increased!

Keep the faith,
brenda