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3.0 Overall Rating

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Most voted positive review

23 People found this comment helpful

med is smalll enough to be able to take with no problem in regards to swallowing. However, if you don't get it down right away and it softens in the mouth, you do experience numbness and tingling of the tongue and mouth.

Most voted negative review

3 People found this comment helpful

Not sure if is helps or is just like a sugar pill.

Shared reviews and ratings

Thato Amelia | 55-64 | Female | On medication for 1 to 6 months | Caregiver
5/14/2021
Condition: Lou Gehrig's Disease
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

My husband ALS stopped after we completed him on the Tree of Life clinic herbal supplement which includes his weakness in his right arm and his speech, , visit www. treeoflifeherbalclinic. com they are the best,

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jjneri | 55-64 | On medication for 1 to 6 months | Patient
8/21/2016
Condition: Lou Gehrig's Disease
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

Diagnosed with ALS in January, started Riluzole - I felt worse, weaker, worried abut my liver, etc. My second opinion said this drug may extend my life by 3-4 months! Really! Why a I taking this and feeling worse. I stopped taking it and started taking Protandim (look it up) - I feel great and m back playing the drums with the help of some special gloves since my right hand is weak! Not worth the worry, weakness. My wife has told me I went from being grey and looking like death - to handsome and she says she has her husband back. Protandim in not a cure! It does help with your overhealthRead More Read Less

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porchcat | 55-64 | Female | On medication for less than 1 month | Patient
10/13/2015
Condition: Lou Gehrig's Disease
Overall rating 1.7
Effectiveness
Ease of Use
Satisfaction

I am very tired, constantly. Been taking it for 3 wks. but tiredness is very noticeable. I was taking walks, going to work, etc. - even driving. Doing less since the drug - walks are short 1-2 blocks, and then I have to rest. Not sure that I want to continue.

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woundedwarrior1207 | 65-74 | Male | On medication for 1 to 6 months | Patient
5/23/2015
Condition: Lou Gehrig's Disease
Overall rating 2.3
Effectiveness
Ease of Use
Satisfaction

Seems to me that I have become significantly weaker during the month and a half I have been taking this drug (riluzole). Unable to determine if this weakness caused by disease or the drug. Others who have commented have similar question. Perhaps my doc will have an explanation during my next visit.

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Lucille | 55-64 | Female | On medication for 6 months to less than 1 year | Patient
3/23/2014
Condition: Lou Gehrig's Disease
Overall rating 3.3
Effectiveness
Ease of Use
Satisfaction

I can't determine how much it has helped me because I don't know how I would feel if I have never taken the drug. Overall all I had no side effects that were obvious. The only thing is how long should I take the drug? Does anybody know? I know it could affect my Liver - I have taken the drug for 7 months so far.

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nurse with A:LS | 55-64 | Female | On medication for 1 to 6 months | Patient
10/10/2013
Condition: Lou Gehrig's Disease
Overall rating 2.3
Effectiveness
Ease of Use
Satisfaction

I debated whether or not to take this drug. Will it give me 6 more months of disability for my family to deal with? or will it keep me independent for 6 more months? I started to take it and find it makes me weaker, which I do not need with this disease. It does make your mouth numb if it sits there. I have very little appetite, I'm thinking of going off it and let the disease run its course with me.

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Anonymous | 35-44 | Male | On medication for 1 to 6 months | Patient
10/16/2012
Condition: Lou Gehrig's Disease
Overall rating 2.0
Effectiveness
Ease of Use
Satisfaction

On it for 4 months and after 3rd liver test increase had to quit. hope someone else has better luck

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Niarajud | 55-64 | Female | On medication for less than 1 month | Caregiver
5/8/2012
Condition: Other
Overall rating 2.0
Effectiveness
Ease of Use
Satisfaction

My husband has ALS and he took this medication for two weeks. I noticed a difference in him within the first week. It made him weaker and he was not able to function as good has he had before starting it. The second week on it he noticed the difference and he stopped taking it. The Dr has said it will slow the progression of ALS by six months, one of the side effects is muscle weakness and with ALS you sure do not need to be taking something with muscle weakness as a side effect. From my research one of the causes of ALS toxins in the body, so my husband has a regular detox footbath. We are trying natural supplements. He was diagnosed 2 years ago and is doing pretty good right now.Read More Read Less

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smallspuds | 55-64 | Female | On medication for 1 to 6 months | Patient
3/24/2012
Condition: Lou Gehrig's Disease
Overall rating 3.0
Effectiveness
Ease of Use
Satisfaction

Using for three months. Second liver function test abnormal, third less so. Feeling more fatigued and seems to be increasing rather than maintaining former levels. Edema in my lower legs presumably because of more difficulty with mobility. Have developed insomnia over the last couple of weeks. I'm going to keep up until I see my doc in May, unless the insomnia continues or I get weaker. Then I'll call and request an earlier appointment.

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lucyosc | 55-64 | Female | On medication for less than 1 month | Patient
12/26/2011
Condition: Lou Gehrig's Disease
Overall rating 3.0
Effectiveness
Ease of Use
Satisfaction

I do not know if it is doing anything for me. I have not experienced any side effects. I know that it isn't designed to do anything to the symptoms that I have now. It is designed to slow the progression of ALS.

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Anonymous | 55-64 | Female | On medication for 1 to less than 2 years | Patient
3/13/2011
Condition: Lou Gehrig's Disease
Overall rating 3.0
Effectiveness
Ease of Use
Satisfaction

I have had a lot of side effects such as vomiting, stomach cramps, being dizzy a lot and feeling tired. I don't know if its working or not.

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ekeent | 55-64 | Female | On medication for 1 to 6 months | Patient
9/6/2010
Condition: Lou Gehrig's Disease
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction

Have been on this drug for 3 months now and so far still do not know if it's working for me or not. One thing I do not like about this drug is that I have to swallow it quickly because it dissolves pretty quick. if it stays in my mouth I'll have the feeling of numbness and burning and caused me to cough. Numbness stays for about 10 minutes so I had to rinse it out or swallow something to drink. Drug must be taken on an empty stomach and for me since my tongue controls everything that I put in my mouth so I ended up having to swallow some food to scraped the burning sensation. Yes, very tough drug. Read More Read Less

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just | 55-64 | Female | On medication for 1 to 6 months | Patient
6/28/2010
Condition: Lou Gehrig's Disease
Overall rating 3.0
Effectiveness
Ease of Use
Satisfaction

I've only been on this drug for one month and so far I have no idea what it does to me. Although, my doctor has ordered for me to have a blood test every month and my first was just recently and I have no idea what the lab will find hopefully none. I will come back here to do another review as soon as I find out any progression for my condition from my Neurologist.

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fightingformom | 19-24 | Female | On medication for less than 1 month | Caregiver
5/22/2010
Condition: Lou Gehrig's Disease
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

Rilutek contains Titanium Dioxide. High levels of Titanium dioxide are linked to respiratory tract cancer. The International Agency for Research on Cancer considers this carcinogenic to humans. Rilutek has a warning if cough developes or difficulty in breathing discontinue drug. And most patients with ALS eventually die from discontinued lung function. ALS has been considered caused from exposure to mercury and heavy medals. Please research and find out more!

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1369WALS | 55-64 | Female | On medication for less than 1 month | Patient
4/10/2010
Condition: Lou Gehrig's Disease
Overall rating 2.3
Effectiveness
Ease of Use
Satisfaction

MADE ME VERY SLEEPY & AM CONSIDERABLY WEAKER & UNABLE TO FUNCTION AS WELL AS I USED TO. REDUCED DOSE FROM 50MG BID TO 25MG QD(ONCE A DAY)& WEAKNESS & SLEEPINESS STILL THERE BUT NOT AS BAD.

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cwilson1030 | 55-64 | Male | On medication for 6 months to less than 1 year | Patient
2/9/2009
Condition: Lou Gehrig's Disease
Overall rating 3.3
Effectiveness
Ease of Use
Satisfaction

Not sure if is helps or is just like a sugar pill.

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Anonymous | 55-64 | Female | On medication for 6 months to less than 1 year | Patient
1/7/2009
Condition: Lou Gehrig's Disease
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction
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Anonymous | 19-24 | Female | On medication for 1 to less than 2 years | Patient
4/13/2008
Condition: Lou Gehrig's Disease
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I have no problems with this drug, no side effects. My doctor did knock me down from 2 pills a day to 1 because my liver enzymes were up. I get that checked every month, and my liver has been fine.

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playcfire2 | 45-54 | Female | On medication for 2 to less than 5 years | Patient
10/29/2007
Condition: Lou Gehrig's Disease
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

med is smalll enough to be able to take with no problem in regards to swallowing. However, if you don't get it down right away and it softens in the mouth, you do experience numbness and tingling of the tongue and mouth.

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