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Diary Of A Gilenya Pioneer: Gilenya Followup – YES! I Can Continue Taking Gilenya!

September 6, 2011 by Sara

Gilenya Followup
On The Pill!

YES! At my Gilenya followup today I learned that blood tests confirm I can continue Gilenya!

Although my current neurologist isn’t a fan of letting his patients view any of their test results I stole my paperwork for a quick read during the 3 hour wait to see him.

What I read initially sent me into a panic.

  • Page 1: My immune system has been decimated. I am one germ away from sudden death.
  • Pages Everything Else: Greek.

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Filed Under: gilenya, liver damage, lymphocyte, macular edema, multiple sclerosis, treatment Tagged With: copaxone, disease, fingolimod, followup, fty720, gilenya, liver, lymphocytes, macular edema, ms, multiple sclerosis, neurological disorder, neurologist, novartis, pill, s1p-receptor modulator, side effects

Diary Of A Gilenya Pioneer: Fingers Crossed As I Experience Gilenya Side Effects

August 28, 2011 by Sara

Gilenya Side Effects

Several months have passed since I began taking Gilenya on May 5. Today I’m focusing on the drug’s possible side effects and how I have personally been affected. The good news is that I seem to be mostly fine so far. In spite of this year’s gloomy start with 2 separate attacks within it’s first few months, I have had no attacks since beginning this treatment. In hindsight I really do feel that Rebif, and probably interferons in general, are just not right for my body. Now that I have begun the drug I have started to focus on Gilenya side effects.

With my Gilenya followup appointment looming in a couple of weeks, I’ll soon find out if Gilenya suits me in the long run. As you can see, I do have my fingers crossed!

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Filed Under: fingolimod, gilenya, liver damage, lymphocyte, macular edema, multiple sclerosis, rebif, symptoms, treatment Tagged With: disease, exacerbation, fingolimod, flexibility, fty720, gilenya, high blood pressure, hypertension, infection, insomnia, liver, lymphocytes, macular edema, mobility, ms, ms attack, multiple sclerosis, muscle pain, nerve pain, neurological disorder, neurologist, novartis, pill, s1p-receptor modulator, shortness of breath, side effects, slow heartrate, spasticity, support group, yoga

Diary Of A Gilenya Pioneer: First Dose Of Gilenya

May 5, 2011 by Sara

First Dose Of Gilenya
Gilenya: The Pill Of Things To Come

Will and I spent most of last night in a smoky club in Charlotte. Getting to bed at about 4:30 am not the best way to spend the evening before my first dose of Gilenya.

It has been a bumpy road to get to the first dose. I completed a variety of tests to qualify, endured a prolonged and painful exacerbation brought on by the stress, and fought my insurance company for coverage.

I spent today in my neurologist’s office hooked up to heart monitors and trying to stay awake. I read, slept, and exercised to bring up my heart rate. For the most part, it went alright.

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Filed Under: fingolimod, gilenya, insurance, liver damage, lymphocyte, macular edema, multiple sclerosis, symptoms, treatment Tagged With: fingolimod, gilenya, heart rate, liver, macular edema, ms, multiple sclerosis, neurologist, novartis, socialized health care

Diary Of A Gilenya Pioneer: Switching To Gilenya!

February 11, 2011 by Sara

Switching To Gilenya
Gilenya (Fingolimod)

As it turns out, similarly to my father’s results with Avonex, Rebif has caused my liver enzymes to shoot up to about 3X the upper limit of normal in the span of slightly less than 2 years. My options?

1) Tysabri : the risk of PML is too severe for me to brave this drug – reputed to be a risk of death or severe disability as high as 1 in 200 for some individuals and 1 in 2000 for others
2) Copaxone : statistically slightly less effective than interferons – works great for my father but I truly don’t want to do a daily injection except as a last resort
3) Gilenya : aka Fingolimod – when this was approved by the FDA I wrote a blog post to summarize all the information I could find – it is the only oral disease modifying drug for Multiple Sclerosis – DING! DING! DING!

I have chosen to switch to Gilenya.

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Filed Under: fingolimod, gilenya, insurance, liver damage, lymphocyte, macular edema, multiple sclerosis, rebif, treatment, tysabri Tagged With: avonex, betaseron, copaxone, disease, exacerbation, fingolimod, fty720, gilenya, infection, infusion, injection, interferon, liver, ms, ms attack, multiple sclerosis, neurological disorder, neurologist, novartis, pill, pml, rebif, s1p-receptor modulator, solumedrol, tysabri

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