97 patient evaluations for Riluzole

canmark
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canmark
Sex: M
Data Quality: 3 stars
Bulbar: none
Arms: moderate
Chest: none
Legs: moderate
I am: n
I have:
ALS

See canmark's full Riluzole history

Nov 1, 2013 (Started Jul 15, 2013)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: A little
Dosage: 100 mg Daily
Cost: < $25 monthly

  • 0 helpful marks
wrgguts
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wrgguts
Sex: M
Data Quality: 3 stars
Bulbar: moderate
Arms: severe
Chest: moderate
Legs: severe
I am: g
I have:
ALS

See wrgguts's full Riluzole history

Aug 18, 2013 (Started Aug 10, 2011)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Moderate
  • Side Effects: None
  • Adherence: Always
  • Burden: Very
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: g
I have:
ALS

See speechlessinseattle's full Riluzole history

Jun 27, 2013 (Started May 13, 2009)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Moderate
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Mild
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Severe
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Mild
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Moderate
  • Adherence: Always
  • Burden: A little
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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Mild
  • Adherence: Always
  • Burden: A little
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
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jr42
Sex: M
Data Quality: 3 stars
Bulbar: none
Arms: severe
Chest: none
Legs: moderate
I am: vg
I have:
PMA

See jr42's full Riluzole history

Apr 3, 2013 (Started May 06, 2004)

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

Sep 3, 2010 (Started May 06, 2004)

  • Perceived effectiveness for PMA (Progressive Muscular Atrophy): Moderate
  • Side Effects: Moderate
  • Adherence: Always
  • Burden: Not at all
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)

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

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

See MStone's full Riluzole history

Mar 29, 2013 (Started May 15, 2012)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Usually
  • Burden: Somewhat
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: none
Arms: moderate
Chest: none
Legs: moderate
I am: n
I have:
ALS

See nacona's full Riluzole history

Jan 15, 2013 (Started Apr 05, 2010)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 100 mg Daily
Cost: < $25 monthly

Dec 22, 2010 (Started Apr 05, 2010)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Slight
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Somewhat
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
Wayne Lampe
247 thumb
Wayne Lampe
Sex: M
Data Quality: 2 stars
Bulbar: mild
Arms: severe
Chest: mild
Legs: moderate
I am: g
I have:
ALS

See Wayne Lampe's full Riluzole history

Dec 15, 2012 (Started May 01, 2006)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Mild
  • Adherence: Always
  • Burden: Not at all
Dosage: 100 mg Daily
Cost: < $25 monthly

Jan 1, 2012 (Started May 01, 2006)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 100 mg Daily
Cost: < $25 monthly

Oct 28, 2009 (Started May 01, 2006)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Moderate
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 100 mg Daily
Cost: < $25 monthly

Apr 4, 2009 (Started May 01, 2006)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 100 mg Daily
Cost: < $25 monthly

Jan 27, 2009 (Started May 01, 2006)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 100 mg Daily
Cost: < $25 monthly

Aug 23, 2008 (Started May 01, 2006)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 100 mg Daily
Cost: < $25 monthly

  • 0 helpful marks
jaws-als
35884 thumb
jaws-als
Sex: M
Data Quality: 2 stars
Bulbar: severe
Arms: severe
Chest: severe
Legs: severe
I am: vg
I have:
ALS

See jaws-als's full Riluzole history

Sep 28, 2012 (Started Mar 16, 2011)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): None
  • Side Effects: Mild
  • Adherence: Always
  • Burden: A little
Dosage: 100 mg Daily
Cost: $25-49 monthly

Apr 11, 2011 (Started Mar 16, 2011)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 100 mg Daily
Advice & Tips: It made my fasciculations become noticeably less severe.
Cost: $25-49 monthly

  • 0 helpful marks
Tommy Maker
21803 thumb
Tommy Maker
Sex: M
Data Quality: 3 stars
Bulbar: mild
Arms: severe
Chest: moderate
Legs: severe
I am: n
I have:
ALS

See Tommy Maker's full Riluzole history

Aug 10, 2012 (Started Oct 19, 2009)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 100 mg Daily
Advice & Tips: it may have been effective, after all I am 40 months on since diagnosis. I have stopped taking it now that I am almost physically incapable. I don't relish the prospect of spending an extra three months in physical decrepitude.
Cost: < $25 monthly
Side effects: Complete exhaustion

Apr 30, 2010 (Started Oct 19, 2009)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Mild
  • Adherence: Always
  • Burden: Not at all
Dosage: 100 mg Daily
Advice & Tips: initially I was dreadfully tired and I thought I experienced a bad taste in my mouth but both effects wore off. As to the benefits of the treatment, what can I say, it's difficult to know if it helps, I've not had MND before. However, my MND has slow progression. It should benoted that in the UK there is no cost implication in the decision to take riluzole as the medication is paid for by the National Health Service and costs the patient $10 a month.
Cost: < $25 monthly
Side effects: Complete exhaustion

  • 0 helpful marks
Rachael
140 thumb
Rachael
Sex: F
Data Quality: 2 stars
Bulbar: severe
Arms: severe
Chest: moderate
Legs: severe
I am: vb
I have:
ALS

See Rachael's full Riluzole history

Jul 28, 2012 (Started Jul 14, 2006)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Moderate
  • Adherence: Always
  • Burden: A little
Dosage: 100 mg Daily

  • 0 helpful marks
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Showing 10 of 97 patient evaluations for Riluzole