what meds are they using for ALS?

[Nala]

I was hoping to find out what meds they were using to help (if any) on ALS patients..
a family member was asking about this yesterday...

hugs
Nala

[Al]

The only drug that has been proven to help with ALS is Rilutek. It has limited results. None of the other drugs or supplements or treatments have been proven to do ANY good. Beware of people who tell you different. They are trying to sell you something.

[Nala]

Thanks AL

I have decided to write an article on ALS and hope that I can find somegood information here with your little community. So far I have been very impressed with the honesty and great help I have received here..I thank you kindly

God Bless
Nala

[Titi Lu]

My father was diagnosed recently and I've been persistently researching about Rilutek, and somehow the general idea seems to be that it really isn't much help or worth the side effects.
I should clarify that my Dad has been a lifelong wine enthusiast and according to my research he can't have any alcoholic beverages with Rilutek. Mind you, I know that this may seem as a small sacrifice to make for such an overwhelming disorder/ condition, however this is one of my dad's greatest joys and at this point his enjoyment of life seems to be at the top of my list. Please, illuminate me. I'm just trying to help my Dad make the best of it.

[Al]

Hi Titi. Wlcome to the forum. I am sorry about your father. As a fellow wine enthusiast I will say that Rilutek is hard on your liver. Alcohol is hard on your liver. If you have regular blood tests to check liver function and your liver is not damaged already then a little wine will not hurt. If the blood tests show a problem, then you make a decision. Personally I'd chose wine.
AL.

[Titi Lu]

Hi Titi. Wlcome to the forum. I am sorry about your father. As a fellow wine enthusiast I will say that Rilutek is hard on your liver. Alcohol is hard on your liver. If you have regular blood tests to check liver function and your liver is not damaged already then a little wine will not hurt. If the blood tests show a problem, then you make a decision. Personally I'd chose wine.
AL.

You sound like somebody he would like.
Again, thanks for the input.

[Saubier]

Al,

Has anybody heard of any clinical trials or other investigations of pralidoxime chloride, also called 2-PAM for treatment of ALS? That is the chemical used for long-term treatment of VX (nerve agent) poisoning.

Pappy

[Al]

Pappy. I haven't heard of any trials with this drug myself but you can check this site to see if any are being done in the US.
http://www.clinicaltrials.gov/
AL.

[manrex]

I was hoping to find out what meds they were using to help (if any) on ALS patients..
a family member was asking about this yesterday...

hugs
Nala
I have heard of a drug called arimoclomol that is being studied and i pray that sometime soon they find a cure...God Bless

[johnals]

was just iagnose last month an all i am on is rilutek 50mg twice a ay,sorry d doesnt always work, my mom passed in 90 of als an after not talking to father for years i foun out its on his side too, presently have very weak legs foot rop and some pulmonary symptoms, oes anyboy know if it can cause colds to last longer? may be just my imagination, other than that i feel good[as long as there are no stairs around8)

[CindyM]

Hi Johnals. Welcome to the forum. We've had a couple of other folks with familial ALS-hopefully you will get to "meet" them. Its great that you're doing OK except for some stairs. Jump in at any time with questions and comments. Welcome aboard! Cindy

[Rhonda]

Hi Johnals,
I had a cold back in Jan. that lasted around six weeks, it turned into having both ears infected. I went to the Dr. 3 times during that six weeks before I got to feeling better. I would say with the fatigue that comes with this disease it does make a cold last longer.
Get plenty of rest and up the Vit. C if you take it. Take Care, Rhonda

[Saubier]

Thanks, Al,

Looking at http://www.clinicaltrials.gov/ct/show/NCT00333944?order=1 it looks like that drug isn't very good at organophosphate poisoning either.

Pappy.

[johnals]

well i guess i will be a member for awhile till i figure a way to beat this thing, am currently considering a double blind study at mass. gen on iv antibiotics, just not sure if rilutek will be allowed,or if i want to drag an iv pole everywhere not knowing if its real or placebo, thanks for welcoming me and god bless

[candd]

Johnals,

am currently a subject for ceftriaxone - still looking 4 subjects!

[Ronscatnip]

My husbands wife passed away with ALS and he said it really wasn't worth the cost when there is really no proof that it would help. Just making her life better and happy as long as she was here.
Kathy






QUOTE=Titi Lu]My father was diagnosed recently and I've been persistently researching about Rilutek, and somehow the general idea seems to be that it really isn't much help or worth the side effects.
I should clarify that my Dad has been a lifelong wine enthusiast and according to my research he can't have any alcoholic beverages with Rilutek. Mind you, I know that this may seem as a small sacrifice to make for such an overwhelming disorder/ condition, however this is one of my dad's greatest joys and at this point his enjoyment of life seems to be at the top of my list. Please, illuminate me. I'm just trying to help my Dad make the best of it.[/QUOTE]

[Al]

Hi Kathy. There is proof that Rilutek helps but the jury is still out on how much longer it will give you. How long ago did your husband's wife pass away? If it was very long ago he could be using old information.
AL.

[Lorie]

Hi! I just recently went through an ordeal getting Rilutek for my brother after his MDA Doctor told us that no prescription drug coverage, covers it. I was persistent in finding a way to get it for him, after a literal battle. The insurance does cover it. Just think an MDA Doctor not having information on other resources to get it. And I would have went that way had I not gotten it through his insurance.

I am giving it to Timothy starting next week. I have to do what ever it takes. I will keep you all updated on what it does or dosen't do for him.

Lorie