37 patient evaluations for Fingolimod

TickledPink
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TickledPink
Sex: F
Data Quality: 3 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 history

Jun 18, 2013 (Started Sep 21, 2010)

  • Perceived effectiveness for Multiple Sclerosis: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 0.5 mg Daily
Cost: < $25 monthly
Side effects: Upper respiratory infection, UTI symptoms

Oct 20, 2010 (Started Sep 21, 2010)

  • Perceived effectiveness for Multiple Sclerosis: Major
  • Side Effects: Mild
  • Adherence: Always
  • Burden: Not at all
Dosage: 0.5 mg Daily
Advice & Tips: I had great improvement in all my MS symptoms, there were very few side effects. I was in the clinical trial for 3 years and continue for 1 more year in the extension phase. This drug has given me back my life. Minimal side effects, no hassle to take, have not yet had a relapse in over 3 years and was relapsing every 3 months prior to joining the trial.
Cost: < $25 monthly
Side effects: Upper respiratory infection, UTI symptoms

  • 33 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: mild
Walking: moderate
I am: b
I have:
MS

See JesswithMS's full Fingolimod history

Jun 18, 2013 (Started Sep 30, 2010)

  • Perceived effectiveness for Multiple Sclerosis: Major
  • Side Effects: Mild
  • Adherence: Always
  • Burden: Not at all
Dosage: 0.5 mg Daily
Advice & Tips: Reduced my relapses by more than 70%; which in turn, helped me regain strength and mobility.
Cost: $200+ monthly

Oct 14, 2010 (Started Sep 30, 2010)

  • Perceived effectiveness for Multiple Sclerosis: Slight
  • Side Effects: Moderate
  • Adherence: Always
  • Burden: Not at all
Dosage: 0.5 mg Daily
Cost: $200+ monthly

  • 9 helpful marks
Lisam808
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Lisam808
Sex: F
Data Quality: 2 stars
Relapse: Mild
Sensation: Moderate
Overall: Mild
Cognition: moderate
Vision: moderate
Speech: mild
Swallowing: moderate
Upper limb: mild
Walking: mild
I am: b
I have:
MS

See Lisam808's full Fingolimod history

Apr 11, 2011 (Started Jan 31, 2011)

  • Perceived effectiveness for Multiple Sclerosis: None
  • Side Effects: Severe
  • Adherence: Always
  • Burden: Not at all
Advice & Tips: Began to give me CHF- started with swelling of face and limbs. abnormal ekg. stopped started back on Ty
Cost: < $25 monthly
Side effects: Abnormal EKG (electrocardiogram), Swelling in legs, feet and ankles

Apr 8, 2011 (Started Jan 31, 2011)

  • Perceived effectiveness for Multiple Sclerosis: None
  • Side Effects: Severe
  • Adherence: Always
  • Burden: A little
Cost: < $25 monthly
Side effects: Abnormal EKG (electrocardiogram), Swelling in legs, feet and ankles

Jun 4, 2010 (Started Jan 31, 2011)

  • Perceived effectiveness for Multiple Sclerosis: None
  • Side Effects: Severe
  • Adherence: Always
  • Burden: A little
Cost: < $25 monthly
Side effects: Abnormal EKG (electrocardiogram), Swelling in legs, feet and ankles

  • 4 helpful marks
JustaSmallTownGirl
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JustaSmallTownGirl
Sex: F
Data Quality: 1 star
Sensation: None
Overall: None
Cognition: none
Vision: mild
Speech: none
Swallowing: none
Upper limb: none
Walking: none
I have:
MS

See JustaSmallTownGirl's full Fingolimod history

Feb 1, 2011 (Started Nov 15, 2010)

  • Perceived effectiveness for Multiple Sclerosis: Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 0.5 mg Daily
Cost: $100-199 monthly

  • 2 helpful marks
Tigertroll
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Tigertroll
Sex: F
Data Quality: 2 stars
Sensation: Moderate
Overall: Mild
Cognition: none
Vision: none
Speech: none
Swallowing: mild
Upper limb: moderate
Walking: moderate
I am: g
I have:
MS

See Tigertroll's full Fingolimod history

Jul 10, 2012 (Started Oct 15, 2011)

  • Perceived effectiveness for Multiple Sclerosis: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 0.5 mg Daily
Advice & Tips: I've had just one flare-up that lasted more than a week (felt like spiders crawling on me) in over a year on Gilenya. This is a HUGE improvement for me! Historically, I have had a new episode every 8-12 weeks, and was on a steroid regimen to calm it down at least twice a year.

  • 2 helpful marks
hjkl;'
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hjkl;'
Sex: F
Data Quality: 0 stars
Sensation: Unreported
Overall: Unreported
Cognition: unreported
Vision: unreported
Speech: unreported
Swallowing: unreported
Upper limb: unreported
Walking: unreported
I have:
MS

See hjkl;''s full Fingolimod history

Jul 15, 2012 (Started Apr 15, 2012)

  • Perceived effectiveness for Multiple Sclerosis: None
  • Side Effects: Severe
  • Adherence: Always
  • Burden: Not at all
Dosage: 0.5 mg Daily
Advice & Tips: I took Gilenya for 16 weeks and took 4 rounds of antibiotics for 3 different problems with infections which started immediately upon starting Gilenya. Also had a flare up which required hospital stay with IV steroids. Gilenya & I did not play nicely with each other, but it may work wonders for you. I myself am going back to Tysabri.
Cost: < $25 monthly

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

See jmartell's full Fingolimod history

Aug 17, 2013 (Started Jan 14, 2011)

  • Perceived effectiveness for Multiple Sclerosis: Slight
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 0.5 mg Daily
Cost: < $25 monthly

Dec 22, 2011 (Started Jan 14, 2011)

  • Perceived effectiveness for Multiple Sclerosis: Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 0.5 mg Daily
Cost: < $25 monthly

Mar 24, 2011 (Started Jan 14, 2011)

  • Perceived effectiveness for Multiple Sclerosis: Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 0.5 mg Daily
Cost: < $25 monthly

  • 2 helpful marks
Rick N
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Rick N
Sex: M
Data Quality: 2 stars
Sensation: Moderate
Overall: Mild
Cognition: moderate
Vision: moderate
Speech: mild
Swallowing: mild
Upper limb: mild
Walking: moderate
I am: vg
I have:
MS

See Rick N's full Fingolimod history

Mar 7, 2014 (Started Nov 11, 2011)

  • Perceived effectiveness for Multiple Sclerosis: Slight
  • Perceived effectiveness for to slow down progression: Slight
  • Side Effects: Moderate
  • Adherence: Usually
  • Burden: Not at all
Dosage: 0.5 mg Daily
Advice & Tips: of course a pill is better than giving myself a shot, but that is not the full evaluation point that I would make. Gelenya messed up my thinking processes and threw me into the throe's of depression and anxiety issues. I would noo longer advise this treatment to anyone.
Cost: $25-49 monthly

Apr 7, 2012 (Started Nov 11, 2011)

  • Perceived effectiveness for Multiple Sclerosis: Major
  • Perceived effectiveness for to slow down progression: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 0.5 mg Daily
Advice & Tips: I hare found that Gilenya is convenient to adhere to and I have not side effects whatsoever. Ii have heard stories about sudden death from this treatment. Who knows why the deaths occured but 1000's of people are in this treatment. I tend to believe it is safe. One condition has been higher than normal colds and flu, Possibly dur to redused white cell / immunity
Cost: $25-49 monthly

Feb 6, 2012 (Started Nov 11, 2011)

  • Perceived effectiveness for to slow down progression: Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 0.5 mg Daily
Advice & Tips: I like this treatment as opposed to daily shots.
Cost: $25-49 monthly

Jan 17, 2012 (Started Nov 11, 2011)

  • Perceived effectiveness for to slow down progression: Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 0.5 mg Daily
Cost: $25-49 monthly

  • 2 helpful marks
TickledPink
1468 thumb
TickledPink
Sex: F
Data Quality: 3 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 history

Apr 6, 2010 (Started Aug 20, 2007)

  • Perceived effectiveness for Multiple Sclerosis: Major
  • Side Effects: Mild
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for Multiple Sclerosis: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for Multiple Sclerosis: Major
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
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
MSMomCarrie
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MSMomCarrie
Sex: F
Data Quality: 0 stars
Sensation: Moderate
Overall: Moderate
Cognition: moderate
Vision: moderate
Speech: moderate
Swallowing: mild
Upper limb: moderate
Walking: severe
I have:
MS

See MSMomCarrie's full Fingolimod history

Mar 22, 2011 (Started Nov 12, 2010)

  • Perceived effectiveness for Multiple Sclerosis: Slight
  • Side Effects: Moderate
  • Adherence: Always
  • Burden: Not at all
Cost: $200+ monthly
Side effects: Swelling in ankles, Vision difficulty

Feb 4, 2011 (Started Nov 12, 2010)

  • Perceived effectiveness for Multiple Sclerosis: Slight
  • Side Effects: Moderate
  • Adherence: Always
  • Burden: Not at all
Dosage: 0.5 mg Daily
Cost: $200+ monthly
Side effects: Swelling in ankles, Vision difficulty

  • 1 helpful mark
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