Diary Of A Gilenya Pioneer: Gilenya Results After One Year On Gilenya

Gilenya ResultsHappy anniversary to me! One year ago today I took my first dose of Gilenya. My heart rate waxed and waned that day, but in the 12 months since my life has steadily improved. I don’t expect roses today, but I am ecstatic that the drug is working for me. Until this time last year, I was in a pattern of a relapse every few months. I have now been relapse-free for one year and counting! So far, Gilenya results have been fantastic.

I began the journey secretly hopeful that I might be one of those few people who miraculously have so many of their lesions shrink and heal on Gilenya, but I was also reasonable. Most of my damage is well over a year old, and most neurologists will tell you to stop expecting any improvement after one year. May 5 2011, deep down I believed that I was stuck with what I had in spite of any contradictory fantasies.

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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: Insurance And Gilenya

Insurance And Gilenya

Money Money Money!

Typical Insurance Business Model = Avoid Providing Service? I’ve glimpsed the battle between insurance and Gilenya.

Several weeks ago I got the call from Novartis that I had been rejected by my insurance for Gilenya. When I ask why, she reads to me “Cost exceeds limit per patient. No further review.” My insurance coverage has no limit on the cost of a prescribed medication – it is technically covered and my insurance company has just chosen not to.

Within seconds, I began an exacerbation. For the last few weeks I have been experiencing something that is commonly called “The MS Hug.” I can’t print the things I call it in my head. At its worst, it’s the kind of pain you don’t want to live through.

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Diary Of A Gilenya Pioneer: First Contact With Gilenya!

Contact With GilenyaToday I received my first phone call from Gilenya / Novartis, one month and three days after submitting forms to them. Nurses are specifically assigned as case managers to patients and stay with them at least through the process of getting started on the drug. It has taken awhile to finally have contact with Gilenya, but here we are.

The call mostly consisted of me answering questions about my health history and current doctors. How long have I been diagnosed with Multiple Sclerosis, have I had recent vaccinations, etc. We went over the tests I would need to complete before the first dose, and she told me that they were still undergoing a “benefits investigation” to determine if I was eligible to receive the drug.

The nurse was extremely nice and sounded knowledgeable, at least pertinent to the contents of the conversation. I wish I’d had the forethought to prepare any questions I might come up with ahead of time – I had begun to doubt that I would have any direct contact with the company again.

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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: Gilenya Process Speedbumps

Gilenya Process Speedbumps

Tick Tock, Gilenya, Tick Tock

Almost two weeks ago I posted that  I was in the process of switching to Gilenya. Not so fast, I suppose. My neurologist’s office staff was eager for me to let Gilenya set up all of my doctor appointments for me to undergo the necessary tests. By their accounts they faxed in my information the morning I was in their office, and then a few days later when they hadn’t heard anything back. And then again when I called them after a very unproductive phone call with Gilenya. With such a new drug, I should have expected Gilenya process problems.

Several months ago I switched positions within the company to work in a 24/7 network surveillance group. We rotate weekends, leaving me with a “weekend” during the week for a month here and there. I had hoped that I could use these days to get through all of my doctor appointments this month. But the opportunity to accomplish that is rapidly vanishing.

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