Hi - I have started this drug and am trying to learn about it. I read that one characteristic of Rilutek (http://www.alsforums.com/definitions/rilutek.html) is that it inhibits the release of glutamate in the brain. Excess glutamate kills brain neurons.
I have looked at an article on glutamate - American Journal of Clinical Chiropractic, April 2005, Glutamate/Aspertame - Pain and your Brain. Most of the article is over my head but I am wondering if all the years I used products with aspartame to control weight has added to my current problem. It couldn't be that simple! All you brains out there - help me out in simple language. Thanks...................ruby from vancouver (surrey)

Hi Ruby,
When I realized that I had neurological problems I also started worrying about all of the diet drinks I've been drinking. Aspartame is also in SO many of the low calorie foods that we eat. The reports on it seem convincing, but I honestly don't know. I decided to give it up and see what happened a few months ago. All that happened was that I missed my diet coke and I gained five pounds. I realize that it would probably take longer than a month to notice any differences if there would be any, but I just couldn't deal with the weight gain. I mean it's hard enough to control your weight when you can't get a good work-out, it just wasn't worth it to me!!

When my dad passed away, I was so very depressed..that with time, my nerve cells got damaged. I was very irritated, and got even hypertension..when I consulted a neurologist, he advised me to take rilutek which is meant to prevent nerve cells from damaging. I started taking it, and I dont know if it has double effects, but it helped me to feel less depressed at the same time..I bought it from a reputed online pharmacy and I'm stil using it. Take care you all.

my aunt is a smoker... has been for years. when i was talking to her last night i mentioned (gently) that maybe it's time to quit the "smokes"... she said she heard that smoking enhances the effects of rilutek. obviously i am not going to press her on the one thing she seems to still get pleasure from... but i would love for her to quit smoking. is she pulling my leg about the rilutek and smoking? i can't believe i am even asking this question!!!

anyway, she went to the speech pathologist yesterday and loved her. i was so happy to hear some positive energy in her voice. she said she's going to buffalo new york to be fit for some sort of mouth piece that strengthens the palatte while speaking to make it better? we'll see. i hate the thought of not hearing her voice anymore.

love nicole

Hi - you stated that you would hate to loose your Aunt's voice. There is a devise to record certain statements that you can use later when she has lost her voice. I am sure the members on here can tell you all about it..................ruby from vancouver (surrey)

My Dr. wants me to go on Rilutek and from what Ive read so far it seems like your better off without it. Can anyone help me with this .

It's a duckshoot so to speak. Some take it here, some think it's poison. I believe most of the people here that can afford it do take it. Try www.drugs.com and read up on it.
AL.

Hi Ruby I have been taking Lithium and ritulek for 2 months so far no negative side effects and have no further progression with the disease ao who knows.As for aspartame use ,I asked my neuro guy about that and he said a person would have to ingest gallons of the stuff to do damage

I thought i would write something about it, do you know that i turns into a toxic chemical when it is exposed to heat?? Look on the side of your can and there will be this big word that is red and starts with P.... You never know, those cans are on unrefrigerated trucks before they come to the stores. The constant heating and cooling effect changes the chemical make up of asparatame. I tried drinking diet drinks to loose weight many years ago and when i looked up that funny word on the can, i quit drinking them ASAP.. Sugar may make you fat but it is natural, anything natural is always the better thing.

:-dhi My Name Is Bubbles. They Say My Dad Has Als. The Doctor Told Him About 1 1/2 Years Ago That He Has It. But He Went To 3 Other Doctors To Make Sure. In That Time Fraim He Can Not Use His Left Arm Any More. I Want To Fight This. I Might Be In Denial And Part Of Me Thinks That He Dont Have It. But I Want To Know Everything About It. I Have Studyed On Line And Alos The Libuary Books Has Helped. I Want Him To Start Taking Coq10 But He Thinks It Would Hurt Him Cause He Is On Riluzole Right Now. They Say Taking This Med. Will Give Him 2 More Months. For $900.00 A Month What Does 2 More Months Mean? To Stop It Or Slow It Down. I Enjoy Every Day That I Am With Him. I Am Having A Hard Time Sleeping And Eating And Even Thinking Cause All I Can Do Is Think Of This World With Out Him And It Would Be Gray And Sad. I Want This Sickness To Go Away And Stop . I Want Everyone Out There That Has It To Get Better. They Can Put A Man On The Moon But They Cant Figure This Sickness Out.
Every Night I Pray For All Who Have This Sickness. 3 Years Ago The Doctors Told My Mom She Was Alizemers And Now She Is In An Old Focks Home. Im Lost About All Of This. If Anyone Out There Can Help Me I Would Love It.
God Bless You All!!!!
Bubbles:-d

All I can say is hang in there. This disease is very hard to accept, considering all the other diseases out there. I am sorry to here about your mother and alzhiemers. The only consolence I can give you is your mother will not no what is going on. Your Father on the other hand will suffer the disease process of ALS. Rilutek is very expensive they say it gives you maybe 2 months. What is the price of 2 months. Good luck to you and your family. I understand your pain and grief. Pray for a cure.

Mary

If you can afford Rilutek, I recommend taking it. So far, it is the only medication that has been demonstrated to help PALS in clinical trials. Until the researchers can find out what causes ALS, speculation about chemicals like aspartame is just that -- speculation. The following information is for those who are undecided about taking Rilutek. Riluzole/Rilutek was shown during a clinical trial to have the potential to lengthen life in ALS patients (see: http://www.ncbi.nlm.nih.gov/pubmed/8676624 .) In the referenced study, 959 patients were included. They were randomly assigned a placebo, or riluzole in amounts of either 50, 100 or 200 mg/day. The primary criterion measured was survival without a tracheostomy. A follow-up taken 18 months after completion of treatment showed that 50.4% of placebo-treated patients were alive without tracheostomy. By comparison, 55.3%, 56.8%, and 57.8% of the patients given 50, 100 and 200 mg/day of riluzole, respectively, were alive without tracheostomy. Functional measurements (muscle strength, functional status, respiratory function, patient's assessments of fasciculation, cramps, stiffness, and tiredness) were recorded in the study, but no differences could be found between placebo-treated and riluzole-treated patients. The most common adverse reactions were asthenia, dizziness, gastrointestinal disorders, and rises in liver enzyme activities. The reactions increased with dosage level.

I think I am one of the lucky ones...I was given riltec, riluzol as soon as I was diagnosed, and all I can say is that it darn well worked for me...cut down the fascilations a huge amount...I am also lucky in that in the UK...IF your local health care will provide it, then it only costs about $10 per month, so I get it for that...So far no bad reactions, although I have to go for my second liver function test next week...first one 3 months ago was fine....as for any other chemicals....I am a firm believer that something in my ...normal diet...set this off....all the chemicals they add to stuff. Never have drunk diet drinks so cant blame those.... I think it must be like a food intolerance or allergy, some of the rubbish they put in food affects some people and not others...
On that note...I am a frequent visitor to florida as we have a home there, and visit a local warehouse club, where we buy members mark allergy pills...my husband started using them for hay fever, then we found them good as a mild sleeping pill. Just recently I noticed that when I take them they seem to improve the effect of the riluzole... when I looked at the ingredients, they contain some metal sounding things...I am going to send a copy of the ingredients to my neuro to check out......I was told by one of the top uk neuros, that riluzole COULD extend you life by up to 20%...so if you take it early when you may have been given 3 years, it is a lot more than if you only get 20% of an anticipated 6 months....but I have come to the conclusion that none of the doctors really know that much for sure anyway.
jennifer51

Hi, Jennifer ...

allergy pills...my husband started using them for hay fever, then we found them good as a mild sleeping pill. Just recently I noticed that when I take them they seem to improve the effect of the riluzole

That's very interesting about the allergy pills enhancing the riluzole. Let us know what your neuro says about them. It sounds like you're doing pretty well ... hope so! Glad the riluzole is working!

Take care.

Hi Jennifer, Im based in Northern Ireland and was recently diagnosed with MND i am now been sent to another consultant as Iam so young in his opinion. However he has prescribed Riluzole which I have been taking for a bout 2 weeks now.
How long did it take you to get a full diagnoses? and how quickly did you feel the effects of the drug? have you explored the possibility of the Lithium Carbonate?
Sorry for all the questions but Iam completely frustrated by the way these consultants work it seems that they are more interested in following proceedures than tackling the disease.
Anyway if you get a chance I would appreciate your views on the above.
All the best
Alastair

I am glad it has helped you. My wife, Kay, started using it when she was first diagnosed and had no side effects. Our insurance covered it, except for a small co-pay. The researchers are looking at any and everything that might cause, or help, ALS. They start with analysis, then go to a mouse study, then to ALS patients. Kay participated in a clinical trial of minocycline. The study showed it didn't help and might even be harmful in ALS. She had severe reactions to the drug, but she had no regrets. Even negative results help the research. We need a breakthrough on this disease, and I hope it comes soon. Until a decade ago, ALS was an "orphan disease", which is a term applied to diseases affecting relatively few people. Then, the research community decided that any drug or treatment that helps ALS might also help in Alzheimers and the other neuromuscular diseases. If that proves true, it will mean a huge market for the product. Alzheimers, etc., progress slowly and vary greatly from person to person, so research with those diseases is complicated and takes a long time. Rapid progression is the worst part of ALS, but it does mean that research takes less time, and a LOT more research funding is available now for ALS. To clarify my comment in the earlier post about aspartame and other chemicals or diet supplements, I personally would try anything that might help.

Alistair
I live just outside london....and I am 56...very first symtoms I had but ignored were in Jan 08...we were is america, so did not do anything until after our return, late March. First symptoms were slurred speech, extra swallowing and liquids spurting out of my mouth when I tried to swallow. March 27th saw gp for first time who said he thought I had bulbar...we have private health so saw a consultant next day, who again said bulbar, had all the tests done and waited for all the results and finally was told on 23rd April that I did have bulbar onset als. Since we were private I then had to go thru the hoops and gbe examined NHS to make sure I could get the drugs on the NHS. Eventually started taking rilzol on May 14th. I noticed an IMMEDIATE reduction in twitching, and my speech therapist noticed a difference within 2 days. Up to then I was choking on almost every mouthfull of liquid...and I have to drink a gallon a day due to kidney problems. within a week of starting riluzole there was a twang in my throat and I could then drink much more safely, albeit with a straw for all my drinks.
As for Lithium, I asked my new neuro at an mnd assoc funded clinic, and he told me that it was not legal in Europe or the UK unless you are on a trial. The good news is that the mnd association and DENDRON are going to run trials for lithium...hopefully before the end of this year. I am madly fundraising for the mnd association and have asked for my name to be put forward for the trial...even though I may get the placebo...gotta try
Please private email me if you want to know more about any of this...and do get in touch with the mnd assoc...they are fantastic. I have a free loan lightwriter and electric riser chair coming tomorrow and I have a free loan basic wheelchair which they arranged. I can still talk, just, but it is getting much harder and still walk, with a limp and slowly, but stairs are now a bummer....only really use the wheelchair for airports or shopping malls....Jenniefer51

Jenniefer, thanks for the reply. Iam 32 and also have private health cover. I first noticed my speech slurring October 07 but this was only happening on a saturday night after I had a few beers being Irish this can be quite a common occurance! but i went to the GP twice and then eventually he refered me to a neurologist for an appointment in May 08 and then at the end of June he told me he was 75% sure i had MND then I went back into him towards the end of september 08 for his final diagnoses which was 100%.
He then started prescribing me Rizulose so I have been taking it for just 3 weeks now. It has taken a long time to get where Iam at now and over this period (5 months) I have deteriated quite quickly my speech has become quite poor and also my walking.
However Iam looking into Lithium Carbonate but I would not be willing to put my myself up for trials as knowing my luck I would end up in the placebo group! Lithium is a drug used already on other conditions so its effects are known and the controls are in place for tests to be carried out, I suppose I will have to wait and see.
Im glad to hear that the rizulose is making things a little easier and I will keep you posted on how it effects me and how I get on with my pursuit on the Lithium front.
All the best and stay strong
Alastair

I just wanted to say welcome. Sorry for your diagnosis, but it sounds like you have a good attitude, and that counts for quite a bit!

take care, :-)

Hi Rose
Thanks very much for the welcome. It is quite interesting and helpful to hear how everyone is getting on and dealing with it and some of the funner forums are very amusing, but I find it difficult to use the website as Im not a wizz kid on computers unfortunately!! i thought I sent an email to that fello John a few days ago but seems to have vanished into cyber space!!
How about yourself have you been diagnosed long? and what medication are you on? do you have any tricks of the trade that you could pass on? Im based in Northern Ireland and because the population is so small there is not that many peolple in the same situation as me which is good as I wouldnt want anyone to be in this situation but I feel it is very hard to understand from the outside.
Anyway I hope you are doing ok and take care
Alastair

Hello Alastair- You won't be able to private message (email) folks on this forum for a little while longer. We had an awful problem with spam so they had to set up a system to weed out fake members.

Meanwhile, you are doing fine. Ask anything you want to know about how to use the site or about MND, and folks around here will be glad to help. As you keep visiting and post a few more responses, the software will learn that you are real, and full membership will kick in soon for you. Cordially, Cindy

Hi, Alistair ... wanted to add another "welcome, glad you found us!"

I have bulbar-onset (slurred speech, swallowing problems, etc.) After 2 years of symptoms, I was dx with ALS in May and put on Rilutek. For me, it seemed to make my symptoms worse, so I stopped it after a month. But if you're able to tolerate it, as you and many others do, it can make a difference in extending your life, so it's worthwhile.

ALS is slowly progressing into both my hands and arms (the left one is worse) now, but I'm still functional (except for my speech), and my legs are still working OK, so I am grateful for that.

I'm taking part in a clinical trial of a med called "Zenvia," which helps calm emotional outbursts, which are common in bulbar ALS. It is working for me, and I find it quite beneficial, giving me more energy and a little more mental clarity, too.

Take care!

Hi, i see your questions have been answered about the private messaging function on here. Just keep posting, and it will be available soon.

I used to go to Belfast when I flew internationally. The driver for the transportation company that picked up the crew at the airport was willing to give us quite an education about the history of Northern Ireland during the ride out to and from the hotel. I learned a lot.... sometimes one of the crew would say, oh no, don't get him to talking, but I would go over and sit close, so I could hear. Of course I only understood about 2/3rds of what was said due to his Irish brogue (or my lack of one, whichever way you want to look at it LOL)

One thing about the Lithium, as it was explained to me at the ALS clinic, one can have a doctor prescribe it, as it is already approved of use, in that it is not an experimental drug. However, if one has taken Lithium via that method, then one is excluded from participating in the trials.

Anyway, its something you might consider, is to have your GP or other doctor, prescribe it for you, rather than the trials. See if you can get it now.

There are a few on this forum that have done this, and if you do a search about Lithium, you would be able to find their feedback. I believe Jeff (Zen Archer) has a link to his blog, and he has his dose, etc on that. (Sorry Jeff if that is not correct, I don't have time to go verify this).

Good luck to you, and don't be a stranger :-)

Thanks for that, I thought you had a block on Irish men!

Hi Beth,
Thanks for the welcome. I first slurred my speech about a year ago now but only really since May 08 has my body been effected especially my left side for some reason, but eventhough my rightside is still pretty strong I find it difficult to open things and do stuff as I used mostly my left hand. My walking was become very robotic but I find if I use a excercise bike for 30 mins at a very low level it seem to free me up a little and walking become easier. I took my nephews to an amusement park called Funderland in Belfast a couple of days ago and was walking like a robot on the way in but after a few rollercoast rides I was walking much better!! now Iam not suggesting that it did me any good but its is strange the effect it had.
I must look into "Zenvia" med you metioned as I have a wild habit of taking fits of giggles which can be fun sometime and very embarressing other time, no tears so I suppose I should complain too much.
Thanks again and Take care
Alastair

Hi Rose
I know a good few Belfast men like you have described there and even I only understand 2/3rds of what they sat too!! I live about 50 mins from Belfast so I would know it reasonably well as I would have had one or two beers there in my day, it has become a good city to go out in since things have calmed down a bit.

My doctor is going to prescibe me Lithium hopefully on wednesday as I had my blood tested lastweek so hopefully it will not effect me and do me a bit of good. I will try and check out the link on Jeff's site

Thanks for that and take care
Alastair

hello alastair...looking forward to being able to email you...
Lithium from your doctor?...let me know if you get it...I was told at an als clinic that it was not allowed in the UK or europe, so I am hopeing to get it on the new dendron trial which should happen early next year...it is being run in the uk so they can compare with the trial in america. There is a conference of neuros in london this week, so I am waiting to hear from my neuro about other possible trials or treatments...hurry up you neuros. Jennifer51

Hi Jennifer, i will keep you posted on how I get on, Lithium it is being used on bi polar conditions world wide and monitored why could it not be prescribed to you to see if it helps?

Hi Jennifer, i will keep you posted on how I get on, Lithium it is being used on bi polar conditions world wide and monitored why could it not be prescribed to you to see if it helps?

my neuro at an mnd/als clinic said LITHIUM is legal for limited purposes in the UK but it is not legal to prescribe it in europe or the UK for mnd..(he is italian working in england for 20 years and is in contact with the doctors in Rome who are running the italian lithium trial). There is going to be a UK trial of the drug through DENDRON Dementia and neuro degenerative diseases..but he says at present you cannot get Lithium for mnd. I did ask if I could go on it, but was refused...the only way is for me to go on the trial, IF I meet the criteria...then I might only get the damn placebo....

Hi Rose
I know a good few Belfast men like you have described there and even I only understand 2/3rds of what they sat too!! I live about 50 mins from Belfast so I would know it reasonably well as I would have had one or two beers there in my day, it has become a good city to go out in since things have calmed down a bit.

My doctor is going to prescibe me Lithium hopefully on wednesday as I had my blood tested lastweek so hopefully it will not effect me and do me a bit of good. I will try and check out the link on Jeff's site

Thanks for that and take care
Alastair

Just wondered if you did get thelithium...as I said in another reply, I thought it was not licenced in the uk for als/mnd. The mnd association with Dendron are about to recruit for a new uk trial with lithium...details are on the mnd assoc website, and I have been sent an email from them with all the legal who ha about it, and who qualifies etc. jennifer51

Hi, Jennifer ...

allergy pills...my husband started using them for hay fever, then we found them good as a mild sleeping pill. Just recently I noticed that when I take them they seem to improve the effect of the riluzole

That's very interesting about the allergy pills enhancing the riluzole. Let us know what your neuro says about them. It sounds like you're doing pretty well ... hope so! Glad the riluzole is working!

Take care.

UPDATE on the allergy pills....I sent the list of active ingredients to my lovely Italian neuro, and he has taken it seriously and is sending the list off to some other people (researchers) to look at...he says they never know how drugs may interact, so it is well worth looking into...needless to say we are now going to stock up. I will update when he comes back with an answer

does anyone take rilutek and smoke? my husband has a prescription for it but doesn't want to fill it because we read that it is not as effective if you smoke doesn't want to quit smoking can't blame him he enjoys it

Even if it's slightly less effective it's better than nothing. I do have a friend who smokes and takes it. She is starting to have breathing issues so may have to give up smoking or give up breathing. By the way, welcome but sorry for your husbands diagnosis. Hope we can help.

AL.

hey rowland's wife,
I was dx on 6/3/08 and started taking Rilutek on 7/1/08. I actually stopped smoking on 6/4/08 because I read the Rilutek was 20% less effective if you smoke. Well, MY neuro told me on 7/1/08 that it was completely up to me to decide.

Needless to say, I still smoke, not nearly as much as I used to, but I do smoke, and I take Rilutek two times a day since 7/1/08.
I guess I won't know if it's 20% less effective or not-but I'm not really worrying about it too much.

My breathing is just fine for now, I get short of breath if I have to go up a flight of steps or something, so I just use the elevator!
take good care,
brenda

Micheline started taking her Rilutek yesterday 50mg twice a day. We are hoping she does not have any ill side effects from it especially some of the stories I have read about it speeding up the progression. This drug scares me and I hope it does her some good but only time will tell I guess. I am hoping since so far the disease is only affecting her legs it will slow down the progression to upper body and beyond.

My dear husband had a problem with Rilutek. He lost all of his taste buds. His neurologist had never heard of this side effect but advised my husband to go off the drug as taste buds were important. My husband went off it and got his taste buds back.

I believe that articifial sweeteners are very dangerous. Also be aware of water bottled in plastic bottles. Use glass.

There are times when I have trouble swallowing Rilutek (like everything else) and it gets stuck in my throat and begins to disolve and my whole throat and my taste buds get numb.

I haven't really had any other bad effects from the drug.

I cant take ANY pills now with liquid...so I used yoghurt, then when that didnt work I went on to pureed or mashed potatoes or any mashed vegetable of that consistency, sometimes with gravy...I can take reasonably big pills now...and none of the numbness of the rilutek..oh how I hated that. If the numbness is all that stops you taking it, then try this..

My partner diagnosed 2 weeks ago was put on Rilutek immediately and has been taking it for two weeks with no side effects. His neurologist's take on this medication was 1. it is the only approved one 2. it has shown to slow down the progression of the disease (however marginal) 3. it has relatively insignificant side effects in most cases
To me, that means it is worth a go.

Danijela
Thats how I feel. Have you heard about the new uk trial with Lithium...I am hoping to get on it...I am being assessed Dec/Jan. I was diagnosed way back in March -April, live in London. Please feel free to email me, maybe I can get you up to date with everything I have found helpwise in all aspects of this horrible illness. ournewemail@googlemail.com
jennifer

Hi Jennifer,

the consultant informed us of the Lithium trial, and I think they will have a group up and running at the MND clinic up here in Manchester. But we have not enquired about the selection criteria for the trial etc. as basically we were both in shock and not prepared for this diagnosis. I will drop you a line, thanks for providing an email address. We lived in London for many years, moved to the North West in 2004. Take care, Danijela

Hi Allistar and everyone else,

I have been taking Rilutek for 2 1/2 weeks now and have started Lithium this morning.

I took the two doctor approach to getting it. My neuro doc prescribed the Rilutek and my family doc set me up with the Lithium. There are upcoming trials here , but there is no promise as to what you will be taking. Piss on that , I want to know what I am taking.

The only side effects from the Rilutek that I have found is if I take it too far away from meals is that I can fart more than a cow. ;) 1 hour before meals is the best for me.

The Lithium, well its only been a couple of hours, and its Saturday, a known lazy day for me .

Hope this helps.

Glen

At the time I was diagnosed 5/08. My symptoms were slurred speech, and cramping under my chin. That was about it. Started Rilutek immediately. I didn't have muscle twitching until 3 or 4 days after starting rilutek. Coincidence? I don't know...maybe. I was a little scared of it at first, but I have no side effects at all. Since I started it right away...I have no idea if its helping me or not. I'm still in pretty decent shape though. Speech, eating, and swallowing are my main problems. Right now its just a uncomfortable inconvenience.