Evaluations from Patients who take Riluzole : PatientsLikeMe

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93 patient evaluations for Riluzole

Tom M

Sex: M

Data Quality: 3 stars

ALS: 4 yrs

Bi-Pap Wheelchair

Bulbar: none

Arms: moderate

Chest: mild

Legs: moderate
by Tom M
See Tom M's full Riluzole history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Oct 14, 2008)*
Date	Dosage	Efficacy	Side Effects	Adherence	Burden
Jan 02, 2012	100 mg Daily	?Can't tell	None	Usually	Not at all

0 helpful marks

Wayne Lampe

Sex: M

Data Quality: 3 stars

ALS: 6 yrs

Feeding tube

Bulbar: moderate

Arms: severe

Chest: mild

Legs: moderate
by Wayne Lampe
See Wayne Lampe's full Riluzole history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started May 01, 2006)*
Date	Dosage	Efficacy	Side Effects	Adherence	Burden
Jan 01, 2012	100 mg Daily	Major	None	Always	Not at all
Oct 28, 2009	100 mg Daily	Moderate	None	Always	Not at all
Apr 04, 2009	100 mg Daily	?Can't tell	None	Always	Not at all
Jan 27, 2009	100 mg Daily	?Can't tell	None	Always	Not at all
Aug 23, 2008	100 mg Daily	?Can't tell	None	Always	Not at all

0 helpful marks

pmotion

Sex: M

Data Quality: 3 stars

ALS: 2 yrs

Bulbar: mild

Arms: moderate

Chest: none

Legs: moderate
by pmotion
See pmotion's full Riluzole history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Aug 27, 2010)*
Date	Dosage	Efficacy	Side Effects	Adherence	Burden
Dec 20, 2011	100 mg Daily	?Can't tell	Mild	Always	Not at all

Date: Dec 20, 2011
Advice & Tips: I stopped with Rilutek because I want to be fitter for the time I have left. I am now using vitamine D and feeling better than with Rilutek. Rilutek just is not the thing for me, why living 3 months longer at the end when your a wreck?
Cost: < $25 monthly

0 helpful marks

ALSSUks

Sex: M

Data Quality: 3 stars

ALS: 4 yrs

Ventilator Wheelchair Feeding tube

Bulbar: severe

Arms: severe

Chest: severe

Legs: severe
by ALSSUks
See ALSSUks's full Riluzole history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Jul 01, 2011)*
Date	Dosage	Efficacy	Side Effects	Adherence	Burden
Nov 09, 2011	100 mg Daily	Moderate	Moderate	Always	Not at all

0 helpful marks

faeroe347

Sex: M

Data Quality: 3 stars

ALS: 2 yrs

Bi-Pap Wheelchair

Bulbar: none

Arms: moderate

Chest: mild

Legs: severe
by faeroe347
See faeroe347's full Riluzole history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Sep 10, 2010)*
Date	Dosage	Efficacy	Side Effects	Adherence	Burden
Oct 31, 2011	100 mg Daily	?Can't tell	Moderate	Always	Not at all

Date: Oct 31, 2011
Advice & Tips: I took this medication for a year because the doctors handed it to me right after my diagnosis. Instead of doing this, I recommend a self-trial to see how tired this stuff makes you.
Cost: < $25 monthly

0 helpful marks

Ronc75

Sex: M

Data Quality: 3 stars

ALS: 1 yr

Bulbar: moderate

Arms: none

Chest: none

Legs: mild
by Ronc75
See Ronc75's full Riluzole history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Aug 01, 2011)*
Date	Dosage	Efficacy	Side Effects	Adherence	Burden
Oct 19, 2011	100 mcg Daily	?Can't tell	Moderate	Always	A little

0 helpful marks

pachamama

Sex: M

Data Quality: 2 stars

ALS: 2 yrs

Wheelchair

Bulbar: mild

Arms: severe

Chest: none

Legs: severe
by pachamama
See pachamama's full Riluzole history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Dec 20, 2010)*
Date	Dosage	Efficacy	Side Effects	Adherence	Burden
Sep 26, 2011	100 mg Daily	?Can't tell	None	Always	Not at all

Date: Sep 26, 2011
Advice & Tips: I'm not sure if I will ever know whether riluzole is helping me or not. I can say the only reason I'm taking it is because it is covered by my insurance. It is my understanding that it would cost $14,000 per year if I had to pay full price. I'm not certain that the promised "1 to 3 months"survival time would seem worth that cost.
Cost: < $25 monthly

0 helpful marks

speechlessinseattle

Sex: F

Data Quality: 3 stars

ALS: 5 yrs

Bulbar: mild

Arms: none

Chest: none

Legs: moderate
by speechlessinseattle
See speechlessinseattle's full Riluzole history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started May 13, 2009)*
Date	Dosage	Efficacy	Side Effects	Adherence	Burden
Sep 17, 2011	100 mg Daily	?Can't tell	None	Always	Not at all
Sep 02, 2010	100 mg Daily	?Can't tell	Mild	Always	Not at all
Aug 25, 2009	100 mg Daily	?Can't tell	Severe	Always	Not at all
Aug 11, 2009	100 mg Daily	?Can't tell	None	Always	Not at all
Jun 06, 2009	100 mg Daily	?Can't tell	Mild	Always	Not at all
Jun 01, 2009	100 mg Daily	?Can't tell	Moderate	Always	A little
May 31, 2009	100 mg Daily	?Can't tell	Mild	Always	A little

Side effects:: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Date: Sep 02, 2010
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

Date: Aug 25, 2009
Advice & Tips: Make sure to get the liver enzyme tests done regularly.
Cost: < $25 monthly

Date: Aug 11, 2009
Advice & Tips: If you can afford it, take it. What can it hurt.
Cost: < $25 monthly

Date: Jun 01, 2009
Advice & Tips: take it as directed by your doctor.
Cost: < $25 monthly

Date: May 31, 2009
Advice & Tips: unsure as of yet.
Cost: < $25 monthly

1 helpful mark

Pen'sup

Sex: F

Data Quality: 3 stars

ALS: 5 yrs

Bi-Pap

Bulbar: none

Arms: mild

Chest: mild

Legs: mild
by Pen'sup
See Pen'sup's full Riluzole history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Jun 15, 2008)*
Date	Dosage	Efficacy	Side Effects	Adherence	Burden
Sep 14, 2011	100 mg Daily	?Can't tell	None	Sometimes	Very
Feb 11, 2011	100 mg Daily	?Can't tell	None	Sometimes	Very
Dec 20, 2010	100 mg Daily	?Can't tell	None	Never	Very
Nov 09, 2009	100 mg Daily	?Can't tell	None	Sometimes	Very
Nov 17, 2008	100 mg Daily	?Can't tell	None	Usually	Not at all

Date: Dec 20, 2010
Advice & Tips: I take with other pills-- just too busy to take as presribed
Cost: < $25 monthly

Date: Nov 17, 2008
Advice & Tips: I have a really hard time being able to take the evening dose at a time when I haven't eaten in 2 hr or don't need to take other medicine within the next hour. many times I take both Li and this at same time -- right before bedtime
Cost: < $25 monthly

0 helpful marks

Navy Nurse

Sex: F

Data Quality: 2 stars

ALS: 11 yrs

Bi-Pap Feeding tube

Bulbar: moderate

Arms: moderate

Chest: none

Legs: moderate
by Navy Nurse
See Navy Nurse's full Riluzole history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Oct 18, 2001)*
Date	Dosage	Efficacy	Side Effects	Adherence	Burden
Aug 13, 2011	100 mg Daily	?Can't tell	None	Always	Not at all
Nov 17, 2010	100 mg Daily	?Can't tell	None	Always	Not at all

0 helpful marks

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