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Riluzole Treatment Report

Category: Prescription Drugs

Most Popular Types: Rilutek

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Generic Name: Riluzole

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94 patient evaluations for Riluzole

Purpose: PMA (Progressive Muscular Atrophy) (Started May 06, 2004)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Apr 03, 2013 100 mg Daily Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major ModerateModerateModerateModerateModerate AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Sep 03, 2010 100 mg Daily Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate ModerateModerateModerateModerateModerate AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Sep 15, 2008 100 mg Daily Led_efficacy_2Led_efficacy_2Led_defaultLed_defaultSlight MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot 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.
  • Icon_thumb_on 1 helpful mark
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 NoneNoneNoneNoneNone UsuallyUsuallyUsuallyUsuallyUsually SomewhatSomewhatSomewhatSomewhatSomewhat
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
  • Icon_thumb_off 0 helpful marks
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 MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jan 01, 2012 100 mg Daily Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Oct 28, 2009 100 mg Daily Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Apr 04, 2009 100 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jan 27, 2009 100 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Aug 23, 2008 100 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
  • Icon_thumb_off 0 helpful marks
Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Mar 16, 2011)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Sep 28, 2012 100 mg Daily Led_efficacy_1Led_defaultLed_defaultLed_defaultNone MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
Apr 11, 2011 100 mg Daily Led_efficacy_4Led_efficacy_4Led_efficacy_4Led_efficacy_4Major NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Date
Apr 11, 2011
Advice & Tips
It made my fasciculations become noticeably less severe.
Cost
$25-49 monthly
  • Icon_thumb_off 0 helpful marks
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 NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Apr 30, 2010 100 mg Daily ?Can't tell MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot 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
  • Icon_thumb_off 0 helpful marks
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 ModerateModerateModerateModerateModerate AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
  • Icon_thumb_off 0 helpful marks
Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Mar 16, 2012)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
May 21, 2012   Led_efficacy_1Led_defaultLed_defaultLed_defaultNone SevereSevereSevereSevereSevere AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
May 15, 2012 50 mg Daily Led_efficacy_1Led_defaultLed_defaultLed_defaultNone MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot 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
  • Icon_thumb_off 0 helpful marks
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 NoneNoneNoneNoneNone UsuallyUsuallyUsuallyUsuallyUsually SomewhatSomewhatSomewhatSomewhatSomewhat
Feb 04, 2011 100 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot 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
  • Icon_thumb_off 0 helpful marks
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 ModerateModerateModerateModerateModerate AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Sep 17, 2011 50 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Sep 02, 2010 100 mg Daily ?Can't tell MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Aug 25, 2009 100 mg Daily ?Can't tell SevereSevereSevereSevereSevere AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Aug 11, 2009 100 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jun 06, 2009 100 mg Daily ?Can't tell MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Jun 01, 2009 100 mg Daily ?Can't tell ModerateModerateModerateModerateModerate AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
May 31, 2009 100 mg Daily ?Can't tell MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA 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
  • Icon_thumb_on 1 helpful mark
Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Oct 14, 2008)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Jan 02, 2012 100 mg Daily ?Can't tell NoneNoneNoneNoneNone UsuallyUsuallyUsuallyUsuallyUsually Not at allNot at allNot at allNot at allNot at all
  • Icon_thumb_off 0 helpful marks
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