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Old 10-14-2009, 12:10 PM   #1 (permalink)
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Some of you may have already read this article, but in case this has not been posted before... This comes from the Science Daily site.

New Guidelines Identify Best Treatments To Help ALS Patients Live Longer, Easier
ScienceDaily (Oct. 14, 2009) — New guidelines from the American Academy of Neurology identify the most effective treatments for amyotrophic lateral sclerosis (ALS), often called Lou Gehrig's disease. The guidelines are published in the October 13, 2009, issue of Neurology®, the medical journal of the American Academy of Neurology.

"While we are waiting for a cure, people need to know that a lot can be done to make life easier and longer for people with ALS," said lead guidelines author Robert G. Miller, MD, with the Department of Neurology at California Pacific Medical Center in San Francisco and Fellow of the American Academy of Neurology.
ALS is a rapidly progressive and fatal neurologic disease that attacks the nerve cells that control voluntary muscles. Eventually people with ALS are not able to stand or walk, or use their hands and arms, and they have difficulty breathing and swallowing. Most people with ALS die within three to five years from the onset of symptoms. However, about 10 percent survive for 10 or more years.
According to the guidelines, the drug riluzole should be offered to people with ALS to slow the rate at which the disease progresses. Riluzole is the only drug approved by the U.S. Food and Drug Administration to treat ALS and has a modest effect on prolonging survival.
The guidelines also state that life expectancy will likely increase and quality of life may increase for people with ALS who use an assisted-breathing device. Longer life expectancy is also likely for people with ALS who use a feeding tube known as a PEG tube, since nutrition plays a critical role in prolonging survival. The guidelines also recommend doctors consider offering their patients botulinum toxin B to treat sialorrhea, also known as drooling, if oral medications do not help. Moreover, doctors should consider screening their patients for behavioral or thinking problems because studies show many people with ALS have these problems. Such problems might affect some patients' willingness to accept suggested treatments.
"Important treatments available for people with ALS are often not suggested by doctors and not used by patients," said Miller. "It's important that people with ALS know that more treatments are now available to ease the burden of the disease and that they should see neurologists who are aware of these new guidelines and follow them."
In addition, the guidelines recommend people with ALS enroll early in a specialized multidisciplinary ALS clinic to optimize care. "Attending a multidisciplinary clinic will likely increase survival and access to treatments, and may improve quality of life," said Miller.
The cause of ALS is not known, and it's not yet known why ALS strikes some people and not others.
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Old 10-14-2009, 05:16 PM   #2 (permalink)
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Interesting article.
Looks like some people have "revised" their thinking on treatment for living longer and esier.
Hopefully then they will be able to give PALS all the options open to them.

cheers
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Old 10-14-2009, 08:41 PM   #3 (permalink)
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its nice to know but what about those of us that dont have insurance or a way to pay. we just wait and see. my doctor just tells me to keep doing what im doing which is nothing. so i pay 70 dollars every 6 months for that.
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Old 10-15-2009, 08:21 AM   #4 (permalink)
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If you attend an MDA funded ALS Clinic, your visits should be paid for by MDA since you don't have insurance. I believe that the clinic team will try to provide equipment that you need/want from the loaner closet. For Rilutek, you can make an application to receive the drug from the manufacturer at little or no cost.
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Old 10-15-2009, 02:34 PM   #5 (permalink)
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i have tried everything and i was turned down because according to everyone i get to much spousal support.
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Old 10-15-2009, 03:46 PM   #6 (permalink)
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Hi Cutika,
I am sorry to hear you are still going through such a rough time. MDA and ALSA do not have an income requirement. They will help you out regardless of income.
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Old 10-16-2009, 03:04 PM   #7 (permalink)
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sorry but i was told by the social worker that i didnt qualify for help thur MDA
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Old 10-16-2009, 06:20 PM   #8 (permalink)
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Was that a social worker from the MDA? I would double check that, as it is my understanding that MDA will treat anyone at one of their sponsored clinics who has ALS and whose insurance won't pay (or who doesn't have insurance).

MDA has closed down some clinics recently as a cost-cutting measure, but I don't think anyone has to "qualify" for their help. Contact them directly.
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Old 10-16-2009, 06:32 PM   #9 (permalink)
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If you attend an MDA funded ALS Clinic, your visits should be paid for by MDA since you don't have insurance. I believe that the clinic team will try to provide equipment that you need/want from the loaner closet. For Rilutek, you can make an application to receive the drug from the manufacturer at little or no cost.

Actually, the post by vcunneen is accurate. She should know, she is a representative from the MDA! (unless of course, someone is posing with her name!)
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Old 10-16-2009, 07:21 PM   #10 (permalink)
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Sorry to break in on this serious thread but, CJ what the heck happened to Mona? I think that Leonardo would be turning over in his grave! Is that Mr. Bean?
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Old 10-16-2009, 07:33 PM   #11 (permalink)
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Yep! That's Mr. Bean! Sorry Leonardo! Tee Hee! All in the spirit of Halloween...Mona has disguised herself and is toting a stuffed bear!
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Old 10-17-2009, 10:58 PM   #12 (permalink)
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I don't see anything earth shattering with this new set of guidelines. I think everyone knows that Rilutek (modestly helps), peg tubes, and respiratory devices help you survive longer. Maybe they should wait to get back to us when they actually come up with a new treatment that slows the progression of the disease.
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Old 10-18-2009, 06:46 AM   #13 (permalink)
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I too found the patient version of the report... well... unhelpful.

But in the "doctor's version", I did come across a few things that were new to me and different than other info I've found (although I'm just a newb compared to most on this forum, so forgive me if this is all old news).

"Riluzole has a modest beneficial effect in slowing disease progression (prolonged survival of 2–3 months) based on 4 Class I trials. ... However, 5 studies using large databases spanning 5 to 10 years have suggested that treatment with riluzole might be associated with a prolonged survival of 6 months (Class II), 10 months (Class III), 12 months (Class III), 14 months (Class III), or even 21 months (Class III). These cohort studies had longer-term follow-up than the clinical trials, but are subject to greater bias."
This is the first info I've personally seen that suggests any Rilutek benefit more than a couple months.

"Two studies failed to find benefit of vitamin E therapy in subjects treated concurrently with riluzole. ... Vitamin E treatment did not slow the rate of functional deterioration (Class I); however, the progression to more severe states of ALS was slower (p = 0.045). ... Vitamin E (1,000 mg/day plus riluzole) was marginally effective in slowing the progression of ALS from milder to more severe ALS health states using a single measure but is ineffective using multiple other measures (1 Class I study) ... High-dose vitamin E should not be considered as treatment for ALS (Level B), while the equivocal evidence regarding low-dose vitamin E permits no recommendation (Level U)."
Must admit I'm having a bit of hard time keeping up with the double-talk here... but I think this section was saying there is maybe, possibly, but don't hold your breath, chance that Vit. E keeps PALS in a more functional state longer, but doesn't affect overall life expectancy. Anyone else read it this way?

"Sniff nasal pressure (SNP) showed greater predictive power than either FVC or MIP ... Nocturnal oximetry and MIP are possibly more effective in detecting early respiratory insufficiency than erect FVC"
First I heard of SNP, and so far I had been led to think that FVC was the "best" indicator of respiratory issues. Sound like perhaps other things to monitor as well.

Lastly... if anyone can explain what the difference is between Class I versus Class III studies are, and what difference is between the Level A, B, C, and U that are referred are, that would be great.

Brian
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Old 10-22-2009, 03:52 PM   #14 (permalink)
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i want to thank you all. i contacted MDA, and you were right. they are helping me.
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Old 10-26-2009, 12:12 PM   #15 (permalink)
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Good news, cukita!
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