100 patient evaluations for Riluzole

Gudjon
118 thumb
Gudjon
Sex: M
Data Quality: 2 stars
Bulbar: mild
Arms: mild
Chest: mild
Legs: moderate
I am: vg
I have:
PLS

See Gudjon's full Riluzole history

May 5, 2016 (Started May 15, 2004)

  • Effectiveness
    Can’t tell (for PLS (Primary Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

Apr 9, 2009 (Started May 15, 2004)

  • Effectiveness
    Can’t tell (for PLS (Primary Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: We should all ask them for better drug. Sins they are alone, nothing new is coming from them.
Cost: < $25 monthly

  • 0 helpful marks
Mike_Sypniewski
67803 thumb
Mike_Sypniewski
Sex: M
Data Quality: 2 stars
Bulbar: moderate
Arms: severe
Chest: severe
Legs: severe
I am: g
I have:
ALS

See Mike_Sypniewski's full Riluzole history

Oct 14, 2015 (Started Sep 15, 2013)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Advice & Tips: I don't think it's doing anything.
Cost: < $25 monthly

Feb 8, 2015 (Started Sep 15, 2013)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: < $25 monthly

  • 0 helpful marks
GrannyR
3458 thumb
GrannyR
Sex: F
Data Quality: 1 star
Bulbar: severe
Arms: moderate
Chest: moderate
Legs: severe
I am: n
I have:
ALS

See GrannyR's full Riluzole history

Oct 12, 2015 (Started May 09, 1995)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily

  • 0 helpful marks
canmark
60687 thumb
canmark
Sex: M
Data Quality: 2 stars
Bulbar: none
Arms: severe
Chest: mild
Legs: severe
I am: n
I have:
ALS

See canmark's full Riluzole history

Oct 10, 2015 (Started Jul 15, 2013)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Never taken as prescribed
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

Nov 1, 2013 (Started Jul 15, 2013)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

  • 0 helpful marks
acarbajal945
61665 thumb
acarbajal945
Sex: M
Data Quality: 1 star
Bulbar: none
Arms: moderate
Chest: none
Legs: none
I am: g
I have:
ALS

See acarbajal945's full Riluzole history

Mar 7, 2014 (Started Mar 07, 2014)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

  • 0 helpful marks
wrgguts
49178 thumb
wrgguts
Sex: M
Data Quality: 2 stars
Bulbar: severe
Arms: severe
Chest: severe
Legs: severe
I am: vg
I have:
ALS

See wrgguts's full Riluzole history

Aug 18, 2013 (Started Aug 10, 2011)

  • Effectiveness
    Moderate (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Very hard to take
Dosage: 100 mg Daily
Cost: $200+ monthly

  • 0 helpful marks
speechlessinseattle
12164 thumb
speechlessinseattle
Sex: F
Data Quality: 3 stars
Bulbar: mild
Arms: none
Chest: none
Legs: moderate
I am: n
I have:
PLS

See speechlessinseattle's full Riluzole history

Jun 27, 2013 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Feb 29, 2012 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Moderate (Sensation in tongue, Weakness in lips, Skin irritation, Lightheadedness, Numbness in tongue, Numbness in lips, Dizziness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily
Advice & Tips: iT CAUSES ME TO HAVE EXTREME DIZZINESS
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Sep 17, 2011 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Sep 2, 2010 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Mild (Sensation in tongue, Weakness in lips, Skin irritation, Lightheadedness, Numbness in tongue, Numbness in lips, Dizziness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: every 12 hrs on an empty stomach is difficult. I think it has slowed down my progression but I cannot be certain.
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Aug 25, 2009 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Severe (Sensation in tongue, Weakness in lips, Skin irritation, Lightheadedness, Numbness in tongue, Numbness in lips)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: Make sure to get the liver enzyme tests done regularly.
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Aug 11, 2009 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: If you can afford it, take it. What can it hurt.
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Jun 6, 2009 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Mild (Sensation in tongue, Skin irritation, Lightheadedness, Numbness in tongue, Numbness in lips)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: $200+ monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Jun 1, 2009 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Moderate (Sensation in tongue, Skin irritation, Lightheadedness, Numbness in tongue, Numbness in lips)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mg Daily
Advice & Tips: take it as directed by your doctor.
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

May 31, 2009 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Mild (Sensation in tongue, Skin irritation)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mg Daily
Advice & Tips: unsure as of yet.
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

  • 1 helpful mark
jr42
4037 thumb
jr42
Sex: M
Data Quality: 3 stars
Bulbar: none
Arms: severe
Chest: mild
Legs: moderate
I am: g
I have:
PMA

See jr42's full Riluzole history

Apr 3, 2013 (Started May 06, 2004)

  • Effectiveness
    Major (for PMA (Progressive Muscular Atrophy))
  • side effects
    Moderate (Flaky skin on face and head, Skin irritation)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Side effects: Skin irritation, Flaky skin on face and head

Sep 3, 2010 (Started May 06, 2004)

  • Effectiveness
    Moderate (for PMA (Progressive Muscular Atrophy))
  • side effects
    Moderate (Flaky skin on face and head, Skin irritation)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: itchiness all over,flaking of skin off face/head- wash hair every day,use DermaVeen shower wash/moisturising lotion daily.
Side effects: Skin irritation, Flaky skin on face and head

Sep 15, 2008 (Started May 06, 2004)

  • Effectiveness
    Slight (for PMA (Progressive Muscular Atrophy))
  • side effects
    Mild (Flaky skin on face and head, Skin irritation)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Side effects: Skin irritation, Flaky skin on face and head

  • 1 helpful mark
MStone
53364 thumb
MStone
Sex: M
Data Quality: 2 stars
Bulbar: none
Arms: mild
Chest: mild
Legs: moderate
I am: g
I have:
ALS

See MStone's full Riluzole history

Mar 29, 2013 (Started May 15, 2012)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Usually
  • Burden
    Somewhat hard to take
Dosage: 2 tablet(s) Daily
Advice & Tips: Ideally you're meant to take: - twice daily, exactly 12 hrs apart - after a 2 hr fast, and followed by a 1 hr fast. After lots of experimentation, I take at 6am & 6pm. Morning is easy, evening is harder to ensure both that I fast properly & that I remember to take. I set a reminder to eat at around 3:45pm, so that I can eat something before my fast from 4pm to 7pm.
Cost: < $25 monthly

  • 0 helpful marks
nacona
27310 thumb
nacona
Sex: M
Data Quality: 3 stars
Bulbar: mild
Arms: moderate
Chest: none
Legs: moderate
I am: g
I have:
ALS

See nacona's full Riluzole history

Jan 15, 2013 (Started Apr 05, 2010)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: After the criteria for acceptance into the patient assistance program changed and after discussing it with my neurologist we determined that the cost far outweighed the benefits.
Cost: < $25 monthly

Jun 17, 2011 (Started Apr 05, 2010)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

Dec 22, 2010 (Started Apr 05, 2010)

  • Effectiveness
    Slight (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: Rilutek is expensive but I am currently on a Patient Assistance Program sponsored by the manufacturer that offers the medication at no charge. I do believe that it has slowed the progression to some degree. Information about this program can be found by contacting Sanofi Aventis directly or through NORD, the National Organization for Rare Disorders.
Cost: $200+ monthly

Sep 19, 2010 (Started Apr 05, 2010)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 100 mg Daily
Advice & Tips: It is expensive if you do not have insurance, and some insurance policies do not cover it. However there is some help from the manufacturer through a program called the Rilutek continuity program. You can contact him directly at 1-800-745-8835. Cost listed below is without this program.
Cost: $200+ monthly

  • 2 helpful marks
Last updated:
Showing 10 of 100 patient evaluations for Riluzole