6 patient evaluations for ALS Phase 3 Study Dexpramipexole (KNS-760704)

AustinMJ
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AustinMJ
Sex: M
Data Quality: 1 star
Bulbar: none
Arms: mild
Chest: none
Legs: none
I am: g
I have:
ALS

See AustinMJ's full ALS Phase 3 Study Dexpramipexole (KNS-760704) history

Jan 16, 2013 (Started Aug 24, 2011)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg Daily
Cost: < $25 monthly

Nov 26, 2012 (Started Aug 24, 2011)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg Daily
Advice & Tips: Been rolled over to open-label for DEX. We hope to have a read-out soon (Dec/Jan) on results. I either have a really slow onset or this drug is really working... maybe both. While I've lost much strength in my right hand, all else is good for the last 2 years. My only negative was an early spike in Liver enzimines...
Cost: < $25 monthly

  • 0 helpful marks
fki2001
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fki2001
Sex: M
Data Quality: 2 stars
Bulbar: none
Arms: severe
Chest: moderate
Legs: severe
I am: n
I have:
ALS

See fki2001's full ALS Phase 3 Study Dexpramipexole (KNS-760704) history

Oct 11, 2012 (Started Jun 16, 2011)

  • Perceived effectiveness for Participate in clinical trial: Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: A little
Dosage: 300 mg Daily
Advice & Tips: This was a drug trial, I did'nt know if I had the placibo or the real drug. October 11,2012 the trial ended. They are giving me the real drug while they are analyzing the trial data.

  • 0 helpful marks
Root10996
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Root10996
Sex: M
Data Quality: 1 star
Bulbar: none
Arms: severe
Chest: none
Legs: severe
I have:
ALS

See Root10996's full ALS Phase 3 Study Dexpramipexole (KNS-760704) history

Oct 10, 2012 (Started Sep 10, 2011)

  • Perceived effectiveness for Participate in clinical trial: Can’t tell
  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 2 Daily

  • 0 helpful marks
jaws-als
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jaws-als
Sex: M
Data Quality: 3 stars
Bulbar: severe
Arms: severe
Chest: severe
Legs: severe
I am: vg
I have:
ALS

See jaws-als's full ALS Phase 3 Study Dexpramipexole (KNS-760704) history

Mar 26, 2012 (Started Jul 05, 2011)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg Daily
Cost: < $25 monthly

Jul 20, 2011 (Started Jul 05, 2011)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 300 mg Daily
Cost: < $25 monthly

  • 5 helpful marks
jadedjohn
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jadedjohn
Sex: M
Data Quality: 1 star
Bulbar: mild
Arms: moderate
Chest: none
Legs: moderate
I am: vb
I have:
ALS

See jadedjohn's full ALS Phase 3 Study Dexpramipexole (KNS-760704) history

Jan 31, 2012 (Started Sep 09, 2011)

  • Perceived effectiveness for Participate in clinical trial: None
  • Side Effects: None
  • Adherence: Always
  • Burden: A little
Dosage: 300 mg Daily
Cost: $100-199 monthly

  • 1 helpful mark
Spodfather
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Spodfather
Sex: M
Data Quality: 1 star
Bulbar: mild
Arms: severe
Chest: mild
Legs: moderate
I am: n
I have:
ALS

See Spodfather's full ALS Phase 3 Study Dexpramipexole (KNS-760704) history

Sep 7, 2011 (Started Jun 14, 2011)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): None
  • Side Effects: Mild
  • Adherence: Always
  • Burden: Not at all
Dosage: 2 Daily
Advice & Tips: Struggling to believe this is doing anything for me in terms of slowing progression, if anything its as though its sped up! maybe i'm on the dummy drug.
Cost: < $25 monthly
Side effects: Sleep problems

Aug 23, 2011 (Started Jun 14, 2011)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Mild
  • Adherence: Always
  • Burden: Not at all
Dosage: 2 Daily
Cost: < $25 monthly
Side effects: Sleep problems

Aug 9, 2011 (Started Jun 14, 2011)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Mild
  • Adherence: Always
  • Burden: Not at all
Dosage: 2 Daily
Advice & Tips: This may be a result of Dex or may not but since the i started 2 months ago my breath test improved from 86 to 93! either way it gave me a lift.
Cost: < $25 monthly
Side effects: Sleep problems

Jun 14, 2011 (Started Jun 14, 2011)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Mild
  • Adherence: Always
  • Burden: Not at all
Dosage: 2 Daily
Advice & Tips: The only side effects i have noticed is a change in my sleeping and slightly more indegestion
Cost: < $25 monthly
Side effects: Sleep problems

  • 4 helpful marks
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Showing 6 of 6 patient evaluations for ALS Phase 3 Study Dexpramipexole (KNS-760704)