“They” say that you are considered newly diagnosed for the first 2 1/2 to 3 years after your Multiple Sclerosis diagnosis. It seems like only yesterday that I posted my “Year One” article. It seems like only yesterday that I was diagnosed! Somehow, enough time has passed that I find myself at a point where I have been living with Multiple Sclerosis for four years.
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!
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.
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.
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.
Today 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.
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.
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.
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.