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My Years On Rebif

April 14, 2012 by Sara

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.

[Read more…] about My Years On Rebif

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!

Diary Of A Gilenya Pioneer: Gilenya Process Speedbumps

February 19, 2011 by Sara

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.

Diary Of A Gilenya Pioneer: Switching To Gilenya!

February 11, 2011 by Sara

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.

Gilenya: First Oral Treatment For Multiple Sclerosis

October 20, 2010 by Sara

There has been a huge breakthrough in MS treatment! An oral medication by Novartis, Gilenya (formerly Gingolimod and FTY720), has finally been approved by the FDA to be available by prescription as a daily 0.5 mg capsule as a first line treatment in October.

Are Neurologists Pushing Tysabri?

May 13, 2010 by Sara

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.