Hello freddie4945-ga,
I?ve done a lot of research into ALS and some medicines/therapies/that
may help you in your situation. I?m going to present these to you in
the hopes you can come up with some combination that helps your
situation out. I also am going to refer you to the disclaimer at the
bottom of the page stating:
?Important Disclaimer: Answers and comments provided on Google Answers
are general information, and are not intended to substitute for
informed professional MEDICAL, psychiatric, psychological, tax, legal,
investment, accounting, or other professional advice. Google does not
endorse, and expressly disclaims liability for any product,
manufacturer, distributor, service or service provider mentioned or
any opinion expressed in answers or comments. Please read carefully
the Google Answers Terms of Service.?
Let?s start with prescribed medication. PLEASE check with your doctor
and make sure you have all the facts on these medications. Not all of
these may work or be right for your situation.
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Rilutek (By prescription only) is the only drug approved by the FDA
for treatment of ALS patients. It was introduced in 1995.
Two random and placebo-controlled tests performed in both Europe and
North America found a difference of about 2 to 3 months in the time to
death in favor of patients treated with Rilutek as compared to those
receiving the placebo.
Potential side-effects include fatigue, nausea, dizziness, diarrhea,
anorexia, vertigo, and change in sleep pattern.
This is the first ALS drug proven to be effective in over 130 years of
research. Because the effect is modest, one must weigh the financial
cost versus the benefit when electing to use Rilutek.
Rilutek is expensive, over $600 for a 30 day supply, but it is covered
under most health insurance policies.
The National Organization for Rare Disorders (NORD) may be able to
assist you with purchasing Rilutek if you do not have insurance. (
http://www.rarediseases.org/ )
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There are some other prescribed medications that may help with the
symptoms of ALS as well. While they do not cure or prevent, it may
make the symptoms easier for the ALS sufferer to handle. I?ll list the
generic first, with the brand name in parenthesis.
For stiffness:
Baclofen (Lioresal)
Tizanidine (Zanaflex)
Memantine, Tetrazepam
Carisoprodol (Soma)
Dantrolene
Marinol
For twitching and cramping:
Quinine Sulfate,
Baclofen (Lioresal)
Clonazepam (Klonopin)
Carbamazepine (Tegretol)
Phenytoin (Dilantin)
Magnesium,
Verapamil (Calan)
For depression:
Luoxetine (Prozac)
Sertraline (Zoloft)
Paroxetine (Paxil)
Amitriptylene (Elavil)
Imipramine (Tofranil)
Nortriptyline (Pamelor)
Fluvoxamine (Luvox)
For excessive laughing or crying:
Amitriptylene (Elavil)
Fluvoxamine (Luvox)
Lithium
L-DOPA
Heartburn:
Pepcid
Ranitidane (Zantac)
For mucus (thick):
Guaifenesin,
Robitussen
Propranolol (Inderal)
Metoprolol (Toprol)
For excess saliva/drool:
Amitriptylene (Elavil)
Trihexyphenidyl Hydrochloride (Artane)
Clonidine (Catapres)
Propantheline (Pro-Banthine)
Benztropine (Cogentin)
Glycapyrrolate (Robinul)
Transdermal Hyoscine (Scopolamine)
Benadryl
Atropine (Sal-Tropine)
Constipation:
Bulk-forming fiber laxative (FiberCon, Citrucel, Metamucil, etc.)
Docusate Sodium (Correctol, Colace, Dulcolax)
Lactulose (Constulose, Duphalac, Chronulac, Constilac)
Frequent urination:
Toterodine (Detrol)
Breathing:
Morphine (Roxanol)
Lorazepam (Ativan)
Midazolam (Versed)
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At John Hopkins University, researchers have found that Celebrex (
http://www.celebrex.com/ ) extended the life of lab mice by 25-30% in
clinical trials. Celebrex is a capsule taken by mouth. In general,
Celebrex is well tolerated. Possible side effects include
gastrointestinal disturbances, kidney problems, and allergic
reactions. People with known allergic sensitivity to sulfa antibiotics
should not take Celebrex.
This medicine has not been tested on humans yet for ALS specific
problems. It is FDA approved for arthritis.
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Minocycline ? A common antibiotic used to treat bacterial infections
may help with ALS symptoms.
Researchers led by Robert M. Friedlander, M.D., of Brigham and Women's
Hospital in Boston, reported study results show the antibiotic
Minocycline delays onset by several weeks and slows progression of
symptoms slightly in a mouse model for ALS.
More evidence about the potential of Minocycline as a treatment for
ALS is in the results of a Canadian study at McGill University of
Minocycline in an ALS lab mouse published in the June, 2002 issue of
Neurobiology of Disease. While the mechanism of how Minocycline slowed
disease progression was unclear, the McGill study team found the mice
fed the Minocycline lived substantially longer, had a delayed onset of
neuronal and muscle deterioration, and a noticeably reduced
inflammation of their brains.
"The analysis clearly demonstrates that Minocycline delays the onset
of neuronal loss and prolongs life in ALS-mice," says Professor
Jean-Pierre Julien, principal investigator of this study. "Minocycline
is potentially more effective than other treatments currently
available and it has no adverse side effects. Our results clearly
indicate that the next step is to commence clinical trials."
There have been no significant studies that have suggested a
recommended dose for ALS patients. This medication may cause stomach
upset, diarrhea, dizziness, unsteadiness, drowsiness, headache, or
vomiting. Use of this medication for prolonged or repeated periods may
result in a secondary infection (e.g., oral, bladder, or vaginal yeast
infection).
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Tamoxifen is a drug that blocks the action of the hormone estrogen. It
is used in the treatment of breast cancer. In patients treated with
Tamoxifen for breast cancer, the most frequent reaction is hot
flashes. Adverse effects of Tamoxifen seen in some breast cancer
patients with long term high doses of the drug include increased
incidence of uterine cancer, stroke and venous thrombosis (blood
clots).
Interest in Tamoxifen began when clinicians at the University of
Wisconsin-Madison noted that an ALS patient receiving Tamoxifen for
breast cancer had an unusually mild form of ALS. It is shown to be
similar to Rilutek in how it slows down motor neuron degeneration in a
lab mouse
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Quite recent news, from the 9th of November, 2004. The FDA has
granted fast track designation to the drug candidate called Myogane
for the treatment of ALS. The Fast Track program is designed to
expedite the review of drug candidates for the treatment of patients
with serious or life-threatening diseases with unmet medical needs for
new therapeutic approaches.
In pre-clinical models, Myogane has been observed to protect against
neuronal damage, increase neurite outgrowth, reverse oxidative damage,
and reverse neuronal apoptosis in vitro. When administered orally to a
transgenic pre-clinical model of ALS, Myogane delays the loss of
muscle strength and extends survival time.
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In Israel they are currently trying to negotiate with British and
American companies to develop 3 drugs thru Varinel Inc. These drugs,
called VK-28, HLA-20 and M30 help to remove iron from the brain of
patients with Parkinson's, Alzheimer's, Huntington's and ALS.
While these are not available, it may be something to watch for in the future.
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Also, if you live in a state with medical marijuana usage, you may
want to check with your doctor into medical marijuana to help with the
ALS. While by NO means do I advocate illegal drug usage, studies have
found that ?select marijuana compounds, including THC, significantly
slow the disease process and extend the life of mice with ALS,? says
study author Mary Abood, PhD.
?The only FDA approved drug for ALS, Riluzole, extends life on average
by about two months,? says Abood. ?Evidence from our study suggests
that a marijuana-based therapy could create a much greater effect,
perhaps extending life by three years or more.?
http://www.rideforlife.com/archives/001153.html
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Now, lets move on to supplements and vitamins. Once again, please
check with your doctor before starting any supplements. Even though
they do not require prescriptions, interactions with supplements and
medications can be fatal.
Creatine - Researchers have reported that Creatine, an
over-the-counter supplement popular as a muscle builder among
athletes, works twice as well in diseased mice as the only approved
prescription drug available for treating Lou Gehrig's disease. The
study, done by researchers at Harvard Medical School and Cornell
University Medical College in Manhattan, was reported in March of 1999
in the science journal Nature Medicine.
The research studied mice with a genetic mutation that normally leads
to the same type of motor neuron destruction as is seen in ALS. The
study found that animals given a diet high in creatine had the same
amount of healthy muscle-controlling nerve cells as mice in the
control group. The animals on the creatine supplements showed complete
protection up to four months, when the disease would normally have
begun to take hold, said Dr. Flint Beal, chairperson of neurology at
Cornell. In addition, the creatine worked twice as well as Riluzole,
the only federally approved drug for Lou Gehrig's disease.
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Coenzyme Q-10 - Researchers at Massachusetts General Hospital and
Harvard Medical School in Boston have found that coenzyme Q10, a
widely available over-the-counter supplement, can combat nerve-cell
degeneration in mice with ALS. The study is in the July 21, 1998 issue
of Proceedings of the National Academy of Sciences. M. Flint Beal of
the Department of Neurology at Massachusetts General and at Cornell
University Medical Center in New York was part of the research team.
There have been no significant studies that have suggested a
recommended dose of CoQ10 for ALS patients. Data gathered from
patients by the ALS Therapy Development Foundation, shows the dosage
of CoQ10 that they chose was from 100-200mg/day while under the care
of their physician. It is recommended that CoQ10 be taken with a fatty
meal to maximize absorption. CoQ10 is available over the counter at
any store selling dietary supplements.
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Next is a list of the most common supplements taken by ALS patients.
It is based on the number of patients reporting taking them for over 6
months as part of the ALS PINpoint Survey of 154 patients as reported
June 21, 2002. For more information, visit the ALS PINpoint website at
http://members.aol.com/alspinpoint/results.html.
Vitamin E
Vitamin C
Rilutek
Creatine
CoEnzyme Q10
Vitamin A/Betacarotine
Vitamin B Complex
Grape Seed Extract
Vitamin b12
Alpha Lipoic Acid
Selenium
Zinc
Ginko Biloba
OPC/Pyncogenol
Magnesium
NAC
DHEA
Melatonin
Ginseng
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I also found someone?s personal regimen who is an ALS sufferer.
1) 700mg Silymarin/St Mary's Thistle (Nature's Sunshine Liv-Pro) - 2 @
175mg tablets x twice daily
2) 1400mg Burdock Root (Arctium lappa) - 2 @ 350mg capsules x twice daily
3) 100mg OPC (Grape Seed and/or Pine Bark extract) - 1 @ 50mg capsule
x twice daily
4) High potency B complex capsules - 1 capsule x twice daily
5) 6000mg Flax Seed Oil - 6 @ 1000mg gel caps daily.
6) 1 Zinc complex tablet - 1 tablet daily
7) 2000mg slow release Vitamin C - 1 @ 1000mg tablet x twice daily
8) 1000mg garlic - 1 @ 500mg capsule x twice daily
9) 1000mg ginger - 1 @ 500mg capsule x twice daily
10) 800mg Ginseng - 2 @ 400mg capsules each morning.
4 litres/8 pints filtered water
Also:
Daily exercise - but not excessive!
http://home.goulburn.net.au/~shack/fmyregimen.htm
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I?ve also read a # of places that ALS patients are recommended to take
place in clinical trials. You can find information on them here
http://www.alsa-or.org/research/research.htm
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As far as a correlation between HIV/AIDS medications and ALS, I have
also found some information for you.
?The ALS Therapy Development Foundation has announced testing of an
HIV/AIDS medication called Nelfinavir. Nelfinavir is one of eight
different compounds in line for testing in the ALS/TDF labs in Boston,
Mass. ALSTDF has been looking closely at the application of HIV
medications for ALS after an initial finding that Ritonavir, one of
the first HIV medications, showed a benefit in the SOD1 mouse.
Ritonavir is now beginning a clinical trial in ALS at the University
of California at San Francisco.
Nelfinavir came to the fore as part of the cocktail taken by Elizabeth
Grandbois, under the care of Dr. John Turnbull at McMaster University
in Hamilton, ON. She had reported benefits using a combination of
Nelfinavir and Combovir. ALSTDF found two other HIV negative people
with ALS who had independently taken the combination and reported a
benefit.?
http://www.als.ca/_news/4128.aspx
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?Last week, Canadian media released a story about a woman with ALS who
has been treated for the last 18 months with an AIDS cocktail. She and
her ALS physician, Dr. John Turnbull of McMaster University in
Ontario, Canada, report that her disease has slowed down and some
symptoms have improved or gone away. This is an encouraging report and
ALSA is pleased to learn that Dr. Turnbull has begun a small clinical
trial with this cocktail of AIDS drugs. Results of this trial will be
available later this year.?
http://www.als.ca/_news/128.aspx
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?Following anti-HIV treatment, two French patients and a 32-year-old
woman from New York recovered completely from the nerve disease, which
was thought to be fatal in all cases, doctors report in today's
Neurology.
"Treat their HIV infection, and the ALS goes away," marvels Burk
Jubelt of the State University of New York Upstate Medical University
in Syracuse, who wrote an accompanying editorial.?
?Daniel MacGowen, author of the case report from New York, says his
patient's recovery seemed almost miraculous.? She went from walking to
not being able to turn over in bed in a matter of months," he says.
"Six months after we put her on this medicine, like Lazarus, this
woman walks into the clinic wearing leg braces. She's doing great.
I've never seen anything like this before."?
http://www.usatoday.com/news/health/aids/2001-09-25-aids-gehrig.htm
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Overall, my recommendation is this. Go to your Dr and maybe one other.
Take a list of this information and ask them what they are willing to
try. The AIDS/HIV medicine may be a wondrous thing, but I cannot
guarantee anything based on the fact the information is so recent. I
think so me daily supplements would help, and maybe home physical and
occupation therapy to make it easier on the sufferer.
I also think that a daily regimen of supplements would not hurt either
health wise, but please, once again, check with your Dr.
I hope this outlined some of the meds and things for you. I also
recommend joining a support group, locally or online to get help for
your friends and loved ones of the sufferer. You have to make sure you
take care of yourself too. Caregiver burnout can be devastating to
both the patient and the caregiver. Look at some of these sources.
http://www.docguide.com/news/content.nsf/PatientResAllCateg/ALS%20(Lou%20Gehrig's%20Disease)?OpenDocument
http://home.goulburn.net.au/~shack/
http://www.alsnetwork.com/
If this answer requires further explanation, please request
clarification before rating it, and I will be happy to look into this
further.
Nenna-GA
Google Answers Researcher
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