37 patient evaluations for Fingolimod

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

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 history

Jun 18, 2013 (Started Sep 21, 2010)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Cost: < $25 monthly
Side effects: Upper respiratory infection, UTI symptoms

Oct 20, 2010 (Started Sep 21, 2010)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • side effects
    Mild (Upper respiratory infection, UTI symptoms)
  • Adherence
    Always
  • Burden
    Not at all hard to take
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: 3 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 history

Jun 18, 2013 (Started Sep 30, 2010)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • side effects
    Mild (Fatigue)
  • Adherence
    Always
  • Burden
    Not at all hard to take
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)

  • Effectiveness
    Slight (for Multiple Sclerosis)
  • side effects
    Moderate (Fatigue)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Cost: $200+ monthly

  • 9 helpful marks
Lisam808
8178 thumb
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: n
I have:
MS

See Lisam808's full Fingolimod history

Apr 11, 2011 (Started Jan 31, 2011)

  • Effectiveness
    None (for Multiple Sclerosis)
  • side effects
    Severe (Abnormal EKG (electrocardiogram))
  • Adherence
    Always
  • Burden
    Not at all hard to take
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)

  • Effectiveness
    None (for Multiple Sclerosis)
  • side effects
    Severe (Abnormal EKG (electrocardiogram))
  • Adherence
    Always
  • Burden
    A little hard to take
Cost: < $25 monthly
Side effects: Abnormal EKG (electrocardiogram), Swelling in legs, feet and ankles

Jun 4, 2010 (Started Jan 31, 2011)

  • Effectiveness
    None (for Multiple Sclerosis)
  • side effects
    Severe (Abnormal EKG (electrocardiogram))
  • Adherence
    Always
  • Burden
    A little hard to take
Cost: < $25 monthly
Side effects: Abnormal EKG (electrocardiogram), Swelling in legs, feet and ankles

  • 4 helpful marks
JustaSmallTownGirl
31159 thumb
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)

  • Effectiveness
    Can’t tell (for Multiple Sclerosis)
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Cost: $100-199 monthly

  • 2 helpful marks
darlinlizzie
15802 thumb
darlinlizzie
Sex: F
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 darlinlizzie's full Fingolimod history

Oct 13, 2011 (Started Dec 01, 2010)

  • Effectiveness
    Can’t tell (for Multiple Sclerosis)
  • side effects
    Severe (Immune system weak, Renal Cell Cancer, lowering my immunity to severe illnesses including kidney cancer (2x))
  • Adherence
    Always
  • Burden
    Not at all hard to take
Cost: < $25 monthly

Sep 18, 2011 (Started Dec 01, 2010)

  • Effectiveness
    Can’t tell (for Multiple Sclerosis)
  • side effects
    Severe (Immune system weak, Renal Cell Cancer, lowering my immunity to severe illnesses including kidney cancer (2x))
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: I am challenged as to if taking this therapy lowers my ability to fight severe resporitory conditions and malignancies.
Cost: < $25 monthly

Jul 1, 2011 (Started Dec 01, 2010)

  • Effectiveness
    None (for Multiple Sclerosis)
  • side effects
    Severe (Immune system weak, Renal Cell Cancer, lowering my immunity to severe illnesses including kidney cancer (2x))
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Cost: < $25 monthly

  • 2 helpful marks
moogie16
4749 thumb
moogie16
Sex: F
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 moogie16's full Fingolimod history

May 24, 2012 (Started Mar 14, 2012)

  • Effectiveness
    Moderate (for Multiple Sclerosis)
  • Effectiveness
    Moderate (for to slow down progression)
  • side effects
    Severe (Swallowing difficulty (dysphagia), Vision loss, Gastritis, Cognitive decline, Difficulty speaking (dysarthria), Weight loss)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: I am able to walk better, have better gait, less spasicity in my legs. I believe the problem is drug interaction with Synthroid. We'll soon find out.
Cost: < $25 monthly

May 11, 2012 (Started Mar 14, 2012)

  • Effectiveness
    Slight (for Multiple Sclerosis)
  • Effectiveness
    None (for to slow down progression)
  • side effects
    Moderate (Swallowing difficulty (dysphagia), Vision loss, Gastritis, Cognitive decline, Difficulty speaking (dysarthria), Weight loss)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Advice & Tips: I'm not as emotional as I was on Tysabri
Cost: < $25 monthly

  • 2 helpful marks
Tigertroll
24432 thumb
Tigertroll
Sex: F
Data Quality: 1 star
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)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
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)

  • Effectiveness
    None (for Multiple Sclerosis)
  • side effects
    Severe (frequent infections, Infection)
  • Adherence
    Always
  • Burden
    Not at all hard to take
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
Rick N
29865 thumb
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)

  • Effectiveness
    Slight (for Multiple Sclerosis)
  • Effectiveness
    Slight (for to slow down progression)
  • side effects
    Moderate (IBS (Irritable Bowel Syndrome))
  • Adherence
    Usually
  • Burden
    Not at all hard to take
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)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • Effectiveness
    Major (for to slow down progression)
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
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)

  • Effectiveness
    Can’t tell (for to slow down progression)
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
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)

  • Effectiveness
    Can’t tell (for to slow down progression)
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Cost: $25-49 monthly

  • 2 helpful marks
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)

  • Effectiveness
    Slight (for Multiple Sclerosis)
  • side effects
    Moderate (Swelling in ankles, Vision difficulty)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Cost: $200+ monthly
Side effects: Swelling in ankles, Vision difficulty

Feb 4, 2011 (Started Nov 12, 2010)

  • Effectiveness
    Slight (for Multiple Sclerosis)
  • side effects
    Moderate (Swelling in ankles, Vision difficulty)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Cost: $200+ monthly
Side effects: Swelling in ankles, Vision difficulty

  • 1 helpful mark
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