6 patient evaluations for Fingolimod Clinical Trial

36 members have decided to share their profiles only with other members of PatientsLikeMe.

AK_Drifter
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AK_Drifter
Sex: M
Data Quality: 1 star
Sensation: Moderate
Overall: Mild
Cognition: moderate
Vision: moderate
Speech: none
Swallowing: none
Upper limb: mild
Walking: mild
I am: g
I have:
MS

See AK_Drifter's full Fingolimod Clinical Trial history

Jan 24, 2011 (Started Oct 27, 2008)

  • Effectiveness
    Can’t tell (for Transplant rejection prevention)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Advice & Tips: Trial from Oct 08-Jan 11. Easy oral med to take (no shots!). Little to no side effects.
Cost: < $25 monthly

Nov 8, 2010 (Started Oct 27, 2008)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 0.5 mg Daily
Cost: < $25 monthly

  • 0 helpful marks
JesswithMS
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JesswithMS
Sex: F
Data Quality: 2 stars
Sensation: Moderate
Overall: Moderate
Cognition: moderate
Vision: mild
Speech: moderate
Swallowing: moderate
Upper limb: moderate
Walking: moderate
I am: b
I have:
MS

See JesswithMS's full Fingolimod Clinical Trial history

Sep 22, 2010 (Started Oct 02, 2008)

  • Effectiveness
    Moderate (for Multiple Sclerosis)
  • Side effects
    Mild (Flatulence, Heart rate low (bradycardia), Lightheadedness, Diarrhea, Dizziness, Acid reflux, Nausea, Fatigue)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: Don't know if I was really on the real drug or not, but it has been a very positive experience for me.
Cost: < $25 monthly
Side effects: Flatulence, Heart rate low (bradycardia), Nausea, Diarrhea, Dizziness, Lightheadedness, Fatigue, Acid reflux

Mar 22, 2010 (Started Oct 02, 2008)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • Side effects
    Mild (Flatulence, Heart rate low (bradycardia), Lightheadedness, Diarrhea, Dizziness, Acid reflux, Nausea, Fatigue)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: I am in a two year double blind placebo study for this drug. I truly feel I am taking the real medicine. It has enabled me to literally start living my life again. I have relapsed while taking this drug, however, the relapses themselves have so mild, I have not needed IV steroids. In the past, while on other DMDs, I would have certainly needed the IV steroids. I am really looking forward to this drug getting FDA approved so others will hopefully have the wonderful benefits I have had.
Cost: < $25 monthly
Side effects: Flatulence, Heart rate low (bradycardia), Nausea, Diarrhea, Dizziness, Lightheadedness, Fatigue, Acid reflux

Feb 13, 2009 (Started Oct 02, 2008)

  • Effectiveness
    Can’t tell (for Multiple Sclerosis)
  • Side effects
    Moderate (Flatulence, Heart rate low (bradycardia), Lightheadedness, Diarrhea, Dizziness, Acid reflux, Nausea, Fatigue)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: Daily
Advice & Tips: For now and for me this drug may be a blessings, especially financially. It has come at a great time when I was out of options for DMDs with the exception of chemo and I wasn't ready or willing to do that. My advice for everyone who is thinking or doing a drug study, make sure you keep a journal, it is truly beneficial.
Cost: < $25 monthly
Side effects: Flatulence, Heart rate low (bradycardia), Nausea, Diarrhea, Dizziness, Lightheadedness, Fatigue, Acid reflux

Oct 3, 2008 (Started Oct 02, 2008)

  • Effectiveness
    Can’t tell (for Multiple Sclerosis)
  • Side effects
    Mild (Flatulence, Heart rate low (bradycardia), Lightheadedness, Dizziness, Acid reflux, Nausea, Fatigue)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Advice & Tips: This is a phase 3 drug study and is not approved by the FDA yet. Will keep a journal for those who may be interested in starting this treatment.
Cost: < $25 monthly
Side effects: Flatulence, Heart rate low (bradycardia), Nausea, Diarrhea, Dizziness, Lightheadedness, Fatigue, Acid reflux

  • 1 helpful mark
shenannigans99
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shenannigans99
Sex: F
Data Quality: 1 star
Sensation: Moderate
Overall: Mild
Cognition: moderate
Vision: moderate
Speech: moderate
Swallowing: moderate
Upper limb: mild
Walking: mild
I am: n
I have:
MS

See shenannigans99's full Fingolimod Clinical Trial history

Aug 3, 2010 (Started Oct 29, 2007)

  • Effectiveness
    Moderate (for Participate in clinical trial)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Advice & Tips: I LOVE not having to do injections anymore. I am in my 2nd year and was told at my last visit that my visits will continue until drug approval or if I should have a major reaction that has been reported, such as macular degeneration. So far, this has been wonderful!!

  • 1 helpful mark
TickledPink
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TickledPink
Sex: F
Data Quality: 2 stars
Sensation: Moderate
Overall: Mild
Cognition: moderate
Vision: mild
Speech: mild
Swallowing: mild
Upper limb: mild
Walking: moderate
I am: g
I have:
MS

See TickledPink's full Fingolimod Clinical Trial history

Apr 6, 2010 (Started Aug 20, 2007)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • Side effects
    Mild
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 1 Daily
Advice & Tips: I have been on this treatment, which is now being evaluated by the FDA under Fast Track status, for 2.5 years. My MS has been in total remission since the first dose. The trial was unblinded in January and that's when I found out I have been on the .5mg dose all along. I have recently been told that my liver enzymes are slightly elevated and we are monitoring them, but not high enough to mandate stopping treatment. Fingolimod (a.k.a. FTY720) now known as Gilenia, has given me back my life -- and my will to live it! Sounds corny and dramatic, but nonetheless, it's still true.
Cost: < $25 monthly

Dec 22, 2008 (Started Aug 20, 2007)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 1 Daily
Advice & Tips: This medication, when approved by the FDA, will be the first ever pill form of a disease modifying drug for MS. The capsule is tiny and you don't even notice when you swallow it. It's 1/3 the size of my daily vitamin. It has given me back my life. I have not relapsed in 22 months now, where before the study, I was relapsing every 3 months. My EDSS has improved and I no longer have to take any meds to manage any symptoms (for spasticity, fatigue or depression). While all meds have side effects, I have been fortunate enough to be taking this with minimal negative effects. The most negative thing I can say is that I had an increase in head colds and UTIs for the first 6 months, but none since. I hope to stay on it once the study is over.
Cost: < $25 monthly

Sep 14, 2008 (Started Aug 20, 2007)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 1 Daily
Advice & Tips: This medication is sure to hit the market and when it does I hope all MSers experience the dramatic reduction in relapses that I have enjoyed. I have gone from relapsing every 3 months to being 17 months relapse free now. I am entering the extension phase tomorrow (Sept. 15th.2008) and will continue for a year taking Fingolimod, but not knowing the dose. After another year it will change to Open Label where all subjects will know the dose they are on.
Cost: < $25 monthly

  • 1 helpful mark
Singer
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Singer
Sex: F
Data Quality: 0 stars
Sensation: Moderate
Overall: Moderate
Cognition: moderate
Vision: moderate
Speech: moderate
Swallowing: moderate
Upper limb: moderate
Walking: moderate
I have:
MS

See Singer's full Fingolimod Clinical Trial history

Jun 1, 2009 (Started Apr 08, 2003)

  • Effectiveness
    None (for Other)
  • Side effects
    Moderate (Heart rate low (bradycardia))
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 1 mg Daily
Cost: < $25 monthly
Side effects: Heart rate low (bradycardia)

  • 0 helpful marks
grumpy40
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grumpy40
Sex: M
Data Quality: 2 stars
Sensation: Moderate
Overall: Moderate
Cognition: moderate
Vision: moderate
Speech: moderate
Swallowing: moderate
Upper limb: moderate
Walking: moderate
I am: b
I have:
MS

See grumpy40's full Fingolimod Clinical Trial history

Jan 10, 2009 (Started Jan 11, 2008)

  • Effectiveness
    Slight (for Multiple Sclerosis)
  • Side effects
    Mild (Heart rate low (bradycardia))
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 1 Daily
Advice & Tips: it's still part of the clinical trial.
Cost: < $25 monthly
Side effects: Heart rate low (bradycardia)

  • 0 helpful marks
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Showing 6 of 6 patient evaluations for Fingolimod Clinical Trial