Have any Canadian PALS been prescribed Lithium?

[rcharlton]

Hi,

Just wondering if any Canadian PALS have been prescribed lithium carbonate.

My ALS specialist is not prescribing lithium to his patients.

Although the results of a larger study are needed to determine if lithium is an effective treatment for ALS, it seems like the risks are low for taking lithium. The side effects are wel known as it has been used to treat bipolar patients for some time - and there seems to be no evidence that it accelerates the progression of ALS.

So I am keen to start right away.

Thanks.

[givenin]

Yes the Calgary ALS clinic is perscribing it to all it's PALs.

[CindyM]

When Al comes back from his vacation I am sure he will have some news. Last I heard he was going on it too!

[Al]

I'm back but with a wicked cold. I started Lithium on Tues. this week. I understand there are a dozen or more in Toronto on it.
AL.

[givenin]

The Dr's in Calgary want the PALS taking Riluzole to take Lithium. My husband startd last Friday and will start the Riluzole in another week.
Question for you Al how often do they want you to have blood work when you start taking the Lithium? Sorry to hear about the cold and hope the snow didn't hinder you holiday.

[Al]

Lee wasn't real crazy about driving 8 hours in a blizzard but she's a pretty good driver. Only the last 4 were real crappy. I get blood tests every month for 3 then 1 every 3 months for first year. I take Riluzole too.
AL.

[Elaine Ramos]

My husband has ALS and wants to take lithium but our ALS Clinic doc won't prescribe it because of its toxicity. My husband said that I'm dying anyway, what do I have to loose? I wonder if the ALS doc won't prescribe, then who can?

[Al]

Your General Physician should be able to prescribe it. In the lower doses it is not as toxic as for it's other uses. Regular monthly blood tests check for levels in the blood and liver function. Print out the study and other information for the doc. He won't have heard of it. My GP has 3 ALS patients and hadn't heard about the study until I emailed him all the info last week.
AL.

[Elaine Ramos]

Al,
what if he is taking creatine too? can he also take lithium?
Elaine

[Al]

I'm not sure but I think someone here said it was not good to take creatine with lithium. A pharmacist might be the best one to ask or the GP.

[rcharlton]

Thanks everyone. I'm going to Sunnybrook to see about a prescription.

Elaine - your husband should not take both creatine and lithium - too hard on the kidneys.

[ZenArcher]

I can say that I am taking both creatine and lithium. I won't say you should or shouldn't. There have been studies done on creatine and at the dosage I'm taking (5g) there has been no proof of kidney stress that I could find. I do however drink at least 1.2 - 1.5L of water a day.

[Mark]

As I have previously talked about, any licensed physician can prescribe lithium. Most likely any physician uncomfortable with its toxicity has little experience prescribing it. Lithium has been around almost as long as I have been. That is 60 years since it was discovered in Australia. It has been used in psychiatry all of this time. I started prescribing in residency in 1970. I myself have gone on it for "bi brachial amyotrophy". Whether my condition will evolve to ALS is not clear. However, given what I consider to be minimal risk with lithium that is appropriately prescribed I have gone on it. Good luck.

Mark

[rick/Wpg]

Hey All
I was at my neuro's and picked up my first prescription of Rilutek on Thursday...asked him about lithium...he is very aware of it as he is the main als neuro in Manitoba....rather than prescribe it himself he simply wrote out the recommended starting dosage and target blood levels for me to take to my GP with a note that my GP could call him if he had any questions. He said the GP would have more experience with lithium than he had anyhow and that it would make more sense for him to track the blood levels,etc as I see him more often
Seems you do have to be very pro active tho to get things rolling....

[LesliePettie]

Hi everyone;
Thank you all for the information you are sharing in this thread. Oliver.ca passed the thread to us. Thanks Oliver.

My husband, Tom, was diagnosed with Bulbar ALS in January. We began noticing symptoms a little over a year ago. So far the problems he is encounting is that his speech is very slurred and he sometimes has difficluty swallowing. His limbs remain strong without numbness or twitching.

We found the Italian lithium research article on the net a couple of days ago. My daughter is a research scientist and after reading the article she told me how very promising this research is. She is very excited.

We are in Edmonton so I am happy to hear that the clinic in Calgary is prescribing Lithium as well as Rilutek to their PALS. Maybe the doctors here will be a little more receptive to perscribing Lithium then they seem to be in some other areas of the country.

We go to the ALS clinic on Wednesday for our second visit, so we will take the Italian article with us and show the doctors.

As you all know, with Bulbar we don't have a lot of time so we will be pressing for them to prescribe Lithium to us ASAP. I will let you all know how it works out on Wednesday.

Regards,
Leslie and Tom

[givenin]

The staff and Dr.s at the Calgary clinic are great and very helpful and are very aware of the Italian study. My husband was dx with Bulbar ALS almost 2 years ago and started the Lithium / Riluzole through the Calgary clinic.

All the best

[rick/Wpg]

Hi Leslie & Tom....just to follow up my post just before yours on this thread.....my GP happily wrote the lithium script and follow up bloodwork tests....I trust it will all go well for you there!
I have been taking the lithium with Rilutek for the last few days with no noticeable side effects except maybe a bit more tired than usual...altho that is hard to measure.
I am so glad you found this forum....it will be a Godsend for you
Rick & Joan

[LesliePettie]

Hello Rick;

Thank you for your encouraging words.

We have just returned from the ALS clinic here in Edmonton. The ALS Neuros there will not prescribe Lithium for us. There are 2 ALS specialists there: Dr. Wendy Johnston (medical director) and Dr. Sanjay Kalra (Clinic Co-director). Dr. Kalra said that they are both concerned that there is not enough evidence that Lithium is effective and/or that it will not harm patients.

They explained that they had concerns with the Italian study and they would like to see some confirmation by other studies first. I told Dr. Kalra that we were willing to take the risk as Bulbar patients have such a short life span anyway...how can it hurt.
It seems that they have defined their roll for themselves as longer term pallitive care givers.

I asked them if him if they knew that the ALS clinic in Calgary was prescribing lithium to their patients and he acknowledged that they did but still he would not be swayed.
He did concede that he would be available to consult if our family physican agreed to write the prescription.

So, our next move is to see our family doctor and we can't do that until next Monday. We will give him all of the information on the Italian article. We also have articles from John Hopkins University, The ALS society of Alberta and an article written by Dr. Jonathan Silver from the New York School of Medicine. I hope these documents will be enough for him to agree to write the script (although they weren't enough to sway the ALS Neuros) and to monitor Tom's blood plasma levels.

As you can probably tell I am a little frustrated at the moment. I feel that our precious little time is just slipping through our fingers like grains of sand.

I will keep you posted.
Leslie

[Al]

Hi Leslie. My information is that in a survey , only 30% of Neuro's said they would prescribe Lithium before the large sanctioned trial starts. Sorry you got 2 of the 70%.
AL.

[givenin]

Good morning Leslie I am sorry to hear that the ALS Dr.s in Edmonton won't perscribe the Lithium to you as that is the only hopefull chance so far but rememmber it is only a slim one and after a few weeks of my husband who has Bulbar being on it there is no good news infact he has become worse and the side affects of the Lithium are not nice. The hope is to slow the progression and in our case who wants to slow down the misery my husband is in now. He has taken other drugs in the hope of changing the out come and has made his life worse for doing so and it has been very hard to watch him suffer. I had hoped that the time we had left would have been spent with quality time and ease not the stress and worry of watching him make himself more ill.
So my advice to you is think twice about whatever you do because it affects all of you not just the PAL. I am sorry to be such a downer but the last few days have been very hard and are getting worse.

Take care and share lots of love.

[Carly(L)]

Hey, dad just got on lithium, about a week ago. it was scary
knowing that there was side effects. but he seems to
be doing okay. when he told the docters that
he wanted be be on lithium, the docters said, its worth a try.
it really is better than nothing. lots of the calgary ALS clinic
does perscribtions. i think.

~Carly

[rcharlton]

Got my prescription from Sunnybrook. Very exciting. I month's prescription was only $23 - so amazing after dishing out thousands for rilutek and supplements over the years.

If you are intent on taking lithium - Don't take no for an answer re: the lithium prescription - if one Dr. says no find someone else who will. Any Dr. can prescribe it. Take a copy of the study and show it to a GP

Lithium may not be the answer - and it may not help everyone (sorry to hear about your husband givenin) - but it is the first real hope that has come along in a while

Lithium has been used for years with bipolar patients - at higher doses - and the side affects are known

Larger studies are needed to establish whether lithium is an effective treatment for PALs - but from my discussions with a number of Dr.s - it appears that for most PALs we have nothing to lose by trying it for a while until the results come in

[rick/Wpg]

Well said Rcharlton! Glad Sunnybrook is so helpful as they have such a good reputation!
I am early into this compared to many on the forum but if there is any hope with this...and minimal side effects.....why not? That is actually what my neuro said as well.

We all need to do our own research,,,,and honestly...if either lithium or rilutek caused me significant side effects that would change my quality of life I would not continue...but so far no real problems at all.
As I am sure givenin can attest( again- our condolences) .....no one here has any guarantee on time left so any hope beats the 'h' out of none!

One of the great benefits of this forum is the exchange of real time information....not waiting 5 years for a study to make its way around. I so appreciate the honesty and frankness of the people on here.

[LesliePettie]

Hello everyone;

Thanks all for your kind words and gifts of support for Tom and me.

Today we were prescribed Lithium! I am holding my breath that there will be some improvement or at least some slowdown of the bulbar symptoms.

givinin I hope things will turn around for you and your spouse. I read that sometimes it takes a couple of weeks for the body to adjust to Lithium. Do you think maybe a dosage change is needed? Hang in there. I'll keep you in my thoughts and prayers. Please keep us posted.

Rcharlton, yes you are right about looking until we find a doctor who will prescribe the drug for us. We went to see a GP that Tom has known for a long time. He immediately prescribed it for us. He was surprised that the ALS Clinic Doctors would not.

Rick, yes I agree that each of us must do our research and then make decisions based on what we find. For Tom and I this is our best and so far only hope. 5 years or even 2 years is too long to wait . I hope and pray that lithium gives us some more time.

Great Carly, I hope things are improving for your dad.

Al, it is hard to believe that 70% of doctors do not want to prescribe a medication that today is the only hope for PALS. I am just dumbfounded!

Today is the first day of the rest of our lives, so I am going to make it a good one.

Leslie

[rick/Wpg]

Hey Leslie and Tom,
Wow! That is such good news!!! You are right...none of us have time to waste. We wish you good luck and are so glad that it worked out. Slim hope beats the heck out of NO hope.

Rick and Joan

[givenin]

Hello Leslie and Tom

Lithium did not work for my husband I wish it had and it did cause some not nice side affects for him and the last 2 days before he passed away he had increased his dosage and he became worse but that is not to say it was the Lithium maybe maybe not we will never know it maybe that it was to late for him to start taking it but I do know that things changed in him a couple of days after he started on it and went downhill from there.
Again I say that it may have been to late for him to start and hopefully it will work for others.

All the best
Cheryl

[LesliePettie]

Dear Cheryl;
I am so sorry about your husband. Tom's and my thoughts are with you during this sad time.
Leslie

[beaner1]

Dear Cheryl,
I am so sorry to hear about your husband - you have my deepest condolences. My thoughts and prayers are with you and your family.
All my best,
Beaner

[LilyC]

Dear Al,

This is Lily, Sharon's daughter. We just attended the Brampton ALS support group and missed your presence.

We heard about the Litium and I was wondering if Sunnybrook was providing it for you? If so, do we simply request it? If not, who could provide it?

Any information you could provide would be greatly appreciated.

Thanks!
Lily

[sherry0459]

Hi, I would love to here more comments on those of you taking the lithium and rilutek too. My Neuro-muscular Dr. gave me a scrip today. Side effects? He wrote for 300mg. I am already on anxiety meds, but he said this is different. I am going to the thread new drugs to see what is in there. He also told me that there is an article in this months Neurology Today but I can not get on their web site. Anyone know where else I might get this article? sherry

[Al]

Hi Lily. I didn't have the W/C van Tues. Yes I get my Lithium at S/brook. Call Myrna or Olive and they'll set up an appointment. I go next Tues the 8th for first month visit.
AL.