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Riluzole Treatment Report

Category: Prescription Drugs

Most Popular Types: Rilutek

See patients taking Riluzole

Sort by: Helpfulness | Most Recent

94 patient evaluations for Riluzole

nacona

Sex: M

Data Quality: 3 stars

ALS: 5 yrs

Bulbar: none

Arms: moderate

Chest: none

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

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Apr 05, 2010)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Jan 15, 2013	100 mg Daily	?Can't tell	None	Always	Not at all
Jun 17, 2011	100 mg Daily	?Can't tell	None	Always	Not at all
Dec 22, 2010	100 mg Daily	Slight	None	Always	Not at all
Sep 19, 2010	100 mg Daily	?Can't tell	None	Always	Somewhat

Date: Jan 15, 2013
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

Date: Dec 22, 2010
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

Date: Sep 19, 2010
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

thomcuddy

Sex: M

Data Quality: 1 star

ALS: 7 yrs

Ventilator Wheelchair Feeding tube

Bulbar: moderate

Arms: severe

Chest: moderate

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

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Feb 20, 2008)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Aug 24, 2008	100 mg Daily	?Can't tell	None	Usually	A little

Date: Aug 24, 2008
Advice & Tips: We can never know if Rilutek does any of us any good. If it doesn't seem to be doing any harm, I believe it is better to take it than not to.
Cost: < $25 monthly

2 helpful marks

speechlessinseattle

Sex: F

Data Quality: 3 stars

ALS: 6 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	Perceived effectiveness	Side Effects	Adherence	Burden
Feb 29, 2012	50 mg Daily	?Can't tell	Moderate	Always	Not at all
Sep 17, 2011	50 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: Feb 29, 2012
Advice & Tips: iT CAUSES ME TO HAVE EXTREME DIZZINESS
Cost: < $25 monthly

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

jr42

Sex: M

Data Quality: 3 stars

PMA: 11 yrs

Bulbar: none

Arms: severe

Chest: mild

Legs: moderate
by jr42
See jr42's full Riluzole history

**Purpose:** PMA (Progressive Muscular Atrophy) *(Started May 06, 2004)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Apr 03, 2013	100 mg Daily	Major	Moderate	Always	Not at all
Sep 03, 2010	100 mg Daily	Moderate	Moderate	Always	Not at all
Sep 15, 2008	100 mg Daily	Slight	Mild	Always	Not at all

Side effects:: Skin irritation, Flaky skin on face and head

Date: Sep 03, 2010
Advice & Tips: itchiness all over,flaking of skin off face/head- wash hair every day,use DermaVeen shower wash/moisturising lotion daily.

1 helpful mark

indyborn

Sex: F

Data Quality: 1 star

ALS: 5 yrs

Ventilator Wheelchair Feeding tube

Bulbar: severe

Arms: severe

Chest: severe

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

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Sep 19, 2008)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Nov 13, 2009	50 mg Daily	?Can't tell	None	Always	Not at all
Aug 10, 2009	50 mg Daily	?Can't tell	None	Always	Not at all
May 23, 2009	50 mg Daily	?Can't tell	None	Always	Not at all
Feb 18, 2009	50 mg Daily	?Can't tell	None	Always	Not at all
Nov 20, 2008	50 mg Daily	?Can't tell	None	Always	Not at all

1 helpful mark

ashfieb

Sex: M

Data Quality: 1 star

ALS: 9 yrs

Bulbar: none

Arms: moderate

Chest: none

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

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Oct 24, 2005)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Aug 19, 2008	100 mg Daily	?Can't tell	None	Always	Not at all

1 helpful mark

Moosemna

Sex: M

Data Quality: 0 stars

ALS: 2 yrs

Bi-Pap Wheelchair

Bulbar: moderate

Arms: severe

Chest: moderate

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

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started May 03, 2009)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Jul 18, 2009	100 mg Daily	?Can't tell	None	Always	Not at all
May 03, 2009	100 mg Daily	?Can't tell	Mild	Always	Somewhat

Side effects:: Abdominal pain, Stomach pain, Nausea

Date: Jul 18, 2009
Advice & Tips: Don't think it's the "Silver Bullet"
Cost: $50-99 monthly

Date: May 03, 2009
Advice & Tips: Stay close to the bathroom
Cost: $50-99 monthly

1 helpful mark

ALS Boy

Sex: M

Data Quality: 0 stars

ALS: 4 yrs

Bulbar: moderate

Arms: moderate

Chest: none

Legs: moderate
by ALS Boy
See ALS Boy's full Riluzole history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Feb 11, 2008)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Oct 20, 2008	100 mg Daily	Moderate	None	Always	Not at all

1 helpful mark

pabbey13053

Sex: F

Data Quality: 0 stars

ALS: 17 yrs

Bulbar: mild

Arms: mild

Chest: none

Legs: mild
by pabbey13053
See pabbey13053's full Riluzole history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Sep 05, 2000)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Nov 05, 2009	100 mg Daily	Major	None	Always	Not at all
Jul 01, 2009	100 mg Daily	Major	None	Always	Not at all
Jan 16, 2009	100 mg Daily	Major	None	Always	Not at all

Date: Nov 05, 2009
Advice & Tips: HELPS WITH ALS

Date: Jul 01, 2009
Advice & Tips: survivor it is

1 helpful mark

fawnlaker

Sex: M

Data Quality: 1 star

PLS: 10 yrs

Bulbar: mild

Arms: none

Chest: none

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

**Purpose:** PLS (Primary Lateral Sclerosis) *(Started Apr 15, 2003)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
May 24, 2003	50 mg Daily	None	None	Always	Not at all

Date: May 24, 2003
Advice & Tips: Of no value to me at all.

1 helpful mark

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