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beverly rees

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My husband was diagnosed with ALS in October from Stanford. The neuro thinks he might be slow progressing and did not recommend ritulek at this time. We got a second opinion from UCSF and the neuro recommended the combination of ritulek and lithium.
Would like to here from anyone taking this combination of meds. Thanks for your help. Bev
 

Al

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I've been taking Rilutek for most of 5 years. Don't know if it's kept me slow but something is. Tried Lithium 3 months and my symptoms went faster. Half a dozen others that started same time as me quit as well because they thought they sped up symptoms. Even patients like me are disappointed with results.

AL.
 

Danijela

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Rilutek and Lithium combination double blind trial is due to commence in the UK this spring. We have spoken to our consultant yesterday and his view is that it does show to work it would mean a further 10% prolongation of life (Rilutek alone about 8%).

I am interested in this study as it aims to provide some definite answers in a controlled environment and the selection/monitoring criteria are quite stringent. They plan to recruit about 200 people from the UK (half will be given placebo). For me, it is studies like this one (double blind, funded by National Health Service and MND Association) that can determine the usefulness of the drug and I would not make a decision on anecdotal evidence alone. At the same time, I fully understand why PALS decide to take lithium prior to its being licensed as an ALS medication.
 

beverly rees

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Al, thank you for your response. Can you tell me how long you have had ALS and what your first symtoms were? Any thoughts on what you have done to keep your progression slow? Bev
 

pmbenb83

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Hi Beverly,
My husband was diagnosed last March with slow progression and was given Rilutek. He took it for a short time, but it made him extremely tired. He stopped using it after about a month.

At the time of diagnosis, we asked if he could try the lithium, but his doctor said he would wait to see if it caused others to speed up before he would prescribe it for him. He does not want to give him any new drug for fear it will speed up his progression. So far so good without any meds. He just takes daily multivitamins and low-dose creatine.

My best to you and your husband.
Pam B in Va
 

beverly rees

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Thanks Pam. I appreciate your help.
 

John1

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My husband was diagnosed with ALS in October from Stanford. The neuro thinks he might be slow progressing and did not recommend ritulek at this time. We got a second opinion from UCSF and the neuro recommended the combination of ritulek and lithium.
Would like to here from anyone taking this combination of meds. Thanks for your help. Bev
Hi Bev,

Unfortunately, the results of a large patient-run trial for lithium as an ALS therapy indicated no benefit after 6 months but did note some adverse affects. Most took rilutek plus lithium and some lithium alone. I seen no reason why further trials will show anything different. Personally, I took lithium from January to September last year and kept monthly records of my ALSFRS scores and observed no slowing of my progression from my pre-lithium period but did have adverse gastrointestinal side effects.
You can find more discussion on lithium on thread https://www.alsforums.com/forum/showthread.php?t=7267

John
 

Connie

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Hi Bev,

My husband, Gordie was diagnosed with ALS in May 2008 and has been on Rilutek nd Lithium since. It seems that every person's experience is different but we think he is slightly better and at least on a plateau and not deteriorating.

The best to you.

Connie
 

brendapals

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Hi Bev,
I was diagnosed on 6/3/08, started taking Rilutek and lithium on 7/3/08. I stopped taking the lithium on 1/15/09-couldn't really say why-other than the more I read about it, the less I think lithium will help.
Mine is bulbar onset with my speech being most affected. No limb involvement, still walking, driving, working 2 days a week as a nurse, hauling 3 boys all over town every day, and finishing up painting baseboards, trim, foundation block on a house we are hoping to sell!
I'm pretty much the same for the last 7+ months, speech is slower and more slurred, but I manage just fine.
Feel free to ask away!
That's the only way we learn anything,
take good care
-b
 

tmasters

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Bev,

If you just want anecdotal information, here's mine:
I started Lithium on 3/31/2008 and Rilutek on 10/14/2008. No significant side-effects of either. I'm a slow progressor, though it's impossible to tell if it's because of the drugs or it's just the way I am.

This is in general the best forum for support and advice, but for this type of question, I have to refer you to the "competition". Members there can enter Lithium and Rilutek status and dosage, and their progression curves so you can see how they have done over time. You can look at individual patient profiles, or graph groups of patients. You can enter specific criteria such as "males with limb onset" and filter the data for that.

-Tom
 
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beverly rees

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Hi Tom,

Thank you for this information. There are so many different opinions it is difficult to make the decision concerning meds. We were strongly against taking any in the beginning but are leaning towards trying the ritulek. At the present time we are afraid to try the lithium due to some people feeling it has increased the progression of the disease.
 
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