Evaluations from Patients who take Riluzole

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

MStone

Sex: M

Data Quality: 3 stars

ALS: 2 yrs

Bulbar: none

Arms: none

Chest: none

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

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started May 15, 2012)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Mar 29, 2013	2 tablet(s) Daily	?Can't tell	None	Usually	Somewhat

Date: Mar 29, 2013
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

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

Wayne Lampe

Sex: M

Data Quality: 2 stars

ALS: 7 yrs

Bi-Pap Wheelchair Feeding tube

Bulbar: moderate

Arms: severe

Chest: moderate

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

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started May 01, 2006)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Dec 15, 2012	100 mg Daily	?Can't tell	Mild	Always	Not at all
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

jaws-als

Sex: M

Data Quality: 2 stars

ALS: 2 yrs

Bi-Pap Feeding tube

Bulbar: moderate

Arms: severe

Chest: moderate

Legs: moderate
by jaws-als
See jaws-als's full Riluzole history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Mar 16, 2011)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Sep 28, 2012	100 mg Daily	None	Mild	Always	A little
Apr 11, 2011	100 mg Daily	Major	None	Always	Not at all

Date: Apr 11, 2011
Advice & Tips: It made my fasciculations become noticeably less severe.
Cost: $25-49 monthly

0 helpful marks

Tommy Maker

Sex: M

Data Quality: 3 stars

ALS: 5 yrs

Bi-Pap Wheelchair

Bulbar: mild

Arms: moderate

Chest: mild

Legs: moderate
by Tommy Maker
See Tommy Maker's full Riluzole history

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Oct 19, 2009)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Aug 10, 2012	100 mg Daily	?Can't tell	None	Always	Not at all
Apr 30, 2010	100 mg Daily	?Can't tell	Mild	Always	Not at all

Side effects:: Complete exhaustion

Date: Aug 10, 2012
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

Date: Apr 30, 2010
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

0 helpful marks

Rachael

Sex: F

Data Quality: 3 stars

ALS: 7 yrs

Bi-Pap Wheelchair

Bulbar: severe

Arms: severe

Chest: moderate

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

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Jul 14, 2006)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Jul 28, 2012	100 mg Daily	?Can't tell	Moderate	Always	A little

0 helpful marks

ALSSUX

Sex: F

Data Quality: 2 stars

ALS: 3 yrs

Bulbar: mild

Arms: moderate

Chest: none

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

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Mar 16, 2012)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
May 21, 2012		None	Severe	Always	Not at all
May 15, 2012	50 mg Daily	None	Mild	Always	Not at all

Date: May 21, 2012
Advice & Tips: side effects outway benefits. I've become extremely fatigued in the last 30 days, in addition I believe it may be making my symptoms worse. In addition, too expensive for the possible benefit of a 2 to 3 month extension of life.
Cost: $200+ monthly

Date: May 15, 2012
Advice & Tips: In my opinion, the cost and possible side effects can out way the benefit. With my current insurance plan this drug will cost me $2,850 annually. But my dr insists I take it, and since my side effects are minimal, I will continue to take it.
Cost: $200+ monthly

0 helpful marks

HappyPhysicist

Sex: M

Data Quality: 2 stars

ALS: 3 yrs

Bulbar: moderate

Arms: mild

Chest: mild

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

**Purpose:** ALS (Amyotrophic Lateral Sclerosis) *(Started Jan 24, 2011)*
Date	Dosage	Perceived effectiveness	Side Effects	Adherence	Burden
Apr 15, 2012	100 mg Daily	?Can't tell	None	Usually	Somewhat
Feb 04, 2011	100 mg Daily	?Can't tell	None	Always	Not at all

Date: Feb 04, 2011
Advice & Tips: Scheduled to take 2 hours after last meal and one hour before. 11 am and 11 pm seems to be the perfect time for that. Set my phone to remind me.
Cost: $25-49 monthly

0 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