My Years On Rebif

Rebif

Interferon Beta 1-A

I’ve written much about Gilenya, but it was not my first treatment. At the time of my diagnosis, Rebif (Interferon Beta 1-A) was really the top drug. Tysabri was the latest thing, but it had only just returned to the market after being yanked so my neurologist avoided prescribing it. In my post-diagnosis panic I felt adrift – unable to make a choice I let current trends determine my direction. If you are trying to choose a drug for MS, take a look at our guide to MS.

With 2 aunts successfully using Beta Seron, one might think that I would do well on interferon. However, my father was taken off Avonex and switched to Copaxone when his liver enzymes were too high to be safe. Rebif was a gamble, but my options were limited. The ease of pre-filled syringes and an auto-injector appealed to me over the possibility of mixing the medicine myself or using a larger needle.

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

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

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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Diary Of A Gilenya Pioneer: First Dose Of Gilenya

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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Diary Of A Gilenya Pioneer: The Gilenya Approval Tests Begin!

Gilenya Approval Tests

The battery of tests begins!

Some good news in my quest to start Gilenya – which is really starting to feel like a quest for the holy grail. I’ve written previously about my hopes for Gilenya and of my frustrations with the slow process. On the day I ceased Rebif I also saw a gastroenterologist for my elevated liver enzymes. The tally so far is $800 for the consult, $600 for the results, and forthcoming bills for some blood tests and an abdomenal ultrasound. Results are that I am clear of all liver diseases – he seemed disappointed. With the liver investigation closed, I am set to begin the Gilenya approval tests required by my neurologist, by my insurance provider, and by Novartis.

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Diary Of A Gilenya Pioneer: Switching To Gilenya!

Switching To GilenyaAs 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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Are Neurologists Pushing Tysabri?

Are Neurologists Pushing Tysabri?

Tysabri : A picture is worth $6900!

It was a dark and stormy night. The hospital corridors were abandoned and echoing with every step. There was a suspicious lack of signage directing individuals to the basement seminar. I had no idea that I had registered for an evening of neurologists pushing Tysabri onto a room full of medicare patients.

My parents assured me that although they’ve gone to many MS events they had never been to a spectacle like this before.

Last night I trekked down to the basement of a hospital branch one county away to attend an MS event my parents had alerted me to called Dialogue of Hope and Health. I can’t deny that I was hoping that the “hope” in the title of the event referred to the new oral medications soon to be available (at least in other countries) or perhaps stem cell developments. It turned out to be something between a sales pitch and damage control conducted by a local neurologist and some Tysabri sales reps.

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