C9orf72 and Riluzol

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wishmobbing

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My boyfriend's mutation has been identified as C9orf72, He's on Rilutek but progression is quick.

Just now I read a script from a palliative nurse who cobbled something together to educate professional caregivers on ALS.
There it said, that Riluzol doesn't seem to help the familial kinds of ALS.
Aha. No source given, so I'm looking for more info and thought I'd right away tap into this part of the forum mind so well-versed in matters familial.

My PALS doesn't seen to suffer any severe side effects of Riluzol/Glentek, so he's taking the medication because "it can't hurt". But if it was scientifically pointless to do this, he could spare himself being reminded two extra times a day of this disease.

On thursday his study nurse will drop by and I hope to be around, learn something new and maybe pick her brain, too.
 

affected

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I have no idea where the nurse got that from as I've never heard it.

Nikki, our forum mod is on some leave just now and her family is C9orf72 and she feels riluzole has helped keep her progression very slow.

Whenever someone says something like that it pays to ask them to show where they get their information from :)
 

wishmobbing

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Jupp, she had some sources down, but only at the end of the thing, that she would not consider medical.
If noone here ever heard of this, I won't look any further and he'll just stay on the meds.
 

Nikki J

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Tillie is correct that I am c9 and I believe riluzole helps me. My neurologist thinks so too.

Riluzole is believed to extend life by 10 percent. Obviously if that is true the slower the progression the more benefit of time.

Some forms of FALS are brutally fast. We had a member who was sod1 and everybody died in 2-3 months from onset. Any benefit of riluzole there would be a few days so if you look at fast forms of ALS ( FALS or not) you could say riluzole is useless. Maybe that is where the comment came from but I do not think there is any research to back it up. When the riluzole studies were done sod1 was the only identified FALS gene.
 

wishmobbing

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Thank you for your opinion during your forum break, Nikki!
His progression is of course much to quick for my taste but nothing like the brutally quick sod1 cases you mentioned. I might by biased. ;- )
Probably the lady mixed up non-existing studies with non-existing effects.
 

Nurse321

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Just read this post concerning Riluzol and what the nurse said. I started taking it about 3 months ago. I think it is important that we try to give hope where we can. I am one of those who hope it will slow the progression. I am lucky and have no side effects as some do. Best wishes to your friend. Enjoy your time together. I am an RN and would never tell a patient that the med they are taking is worthless. Give hope to all of us please.
 
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