novartis

Diary Of A Gilenya Pioneer: Latest Gilenya Test Results

July 28, 2012 by Sara

My one year anniversary of taking Gilenya occurred in May, but my first MRI results and latest blood test since beginning treatment occurred only recently. Multiple Sclerosis can be a very unpredictable disease, but prior to treatment with Gilenya I averaged 2 – 3 relapses per year. My neurologists have told met hat the average gap between relapses is 18 months which I have never achieved. However, I am getting closer every day as this is the longest relapse-free period I have ever had since diagnosis. My Gilenya test results during my last office visit were overwhelmingly positive.

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

May 5, 2012 by Sara

Happy 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.

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

September 6, 2011 by Sara

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.

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

August 28, 2011 by Sara

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!

Diary Of A Gilenya Pioneer: First Month On Gilenya

June 8, 2011 by Sara

My first month on Gilenya has passed.

As a treatment, everything with Gilenya has been going well. Downsides are that I’m a bit drowsy sometimes and a bit cold (both seem so random). Sleep is very difficult. My skin is definitely more sensitive than usual, especially to sunlight which I didn’t think was possible.

Gilenya is rumored to possibly heal previous damage from MS attacks. For my part, I have no idea if Gilenya is healing any damage considering how badly I react to heat and this summer has been brutal.

Diary Of A Gilenya Pioneer: First Dose Of Gilenya

May 5, 2011 by Sara

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.

Diary Of A Gilenya Pioneer: Insurance And Gilenya

April 19, 2011 by Sara

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 it’s worst, it’s the kind of pain you don’t want to live through.

A Reader’s Story – Kathy’s Success With Gilenya

March 15, 2011 by Sara

The message below is a reader’s story sent to me by a reader named Kathy (http://gilenya-girl.blogspot.com/ ) who is also using a blog to chronicle her adventures in treating MS with Gilenya. She’s had tremendous success with it right away. Stories like this give me so much hope!

I have had MS since 1987, although it was not diagnosed until 1992. This is often the case with MS, as we all know. I have been on Beta Seron since 1993. I tried Ampyra last year with no success. I had a major flare-up about four months ago, and steroids no longer worked. My doctor gave me the choice of Gilenya or Tysabri. I hate MRI’s and they are necessary when you are on Tysabri. I selected Gilenya!