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.
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.
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.
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.
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.
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.
Sara’s First MRI
My first year of Multiple Sclerosis went by so quickly.
Year one of my Multiple Sclerosis diagnosis wrapped up about a month ago (I was diagnosed December 10 2008) and I’ve been reflecting on all the randomness and misinformation about the disease. As a lot of things in my life begin to come together (I’m growing up finally!) I find myself mourning the diagnosis more now than I did initially.
No one knows what causes MS and there is no cure. The idea of the cure is threefold: 1 – prevention of the disease, 2 – prevention of further progression of the disease, and 3 – reversal of disability caused by the disease. Theories are that those genetically prone to it may have it set off by exposure to a virus (probably the Epstein-Barr virus), that is is solely due to a vitamin D deficiency, and that a vascular disorder causes a backup of blood that leads to iron deposits in the brain. At any rate, the effect is that the immune system attacks the central nervous system, destroying myelin and the nerves that it protects. About 3/4 of all those diagnosed with MS are women.
Welcome to DiagnosisMS.com!
I was diagnosed with Relapsing-Remitting Multiple Sclerosis December 10, 2008 and have since found myself on a mission to understand as much as humanly possible about the disease, its cause, its symptoms, and the mechanics of treatment for it. Some time ago I began to analyze Multiple Sclerosis and my personal experiences with the disease. My personal story will traverse multiple posts, but it is not an uncommon one for those of us with the disease.