Tysabri is a dream come true for many individuals with Multiple Sclerosis. Personally, I have opted to take Gilenya (for now), but Tysabri was very tempting when I considered my options after it became apparent that Rebif would not work out for me any longer. However, along with Tysabri’s side effects comes one very sinister danger: PML. One patient on Gilenya has been diagnosed with PML, and it can happen to anyone whether or not they have MS. Knowing that medication (especially newer medications) may bring a risk of PML has frightened us all.
“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.
Cog Fog probably started sneaking up on you years before your MS diagnosis. Multiple Sclerosis alone is challenging, but Multiple Sclerosis with Brain Fog involves a totally different set of problems.
“Brain Fog” is a term generally used to describe the confusion, disorientation, general grogginess, and other issues resulting from cognitive dysfunction which commonly occurs with MS.
BG-12 (Dimethyl Fumarate) has not yet been approved for use, but trials have been overwhelmingly positive for this low-risk oral drug. Approved for Fast Track (10 months of review) by the FDA on February 28 2012, BG-12 should be available to Relapsing-Remitting MS patients and possibly for individuals with rheumatoid arthritis as a pill taken 2 or 3 times daily before 2013. The European Union, Canada and Switzerland are also currently reviewing this drug.
In addition to rheumatoid arthritis, Dimethyl Fumarate (DMF) is also being studied for its effects on lupus and cancer. DMF is a Fumaric Acid Ester which has been used to treat psoriasis since 1959.
Neurologists around the world are already planning to make this their go-to first line treatment for patients with Multiple Sclerosis even though Biogen Idec (the company behind Avonex and Tysabri) has not yet released a price profile of the drug. Why is BG-12 expected to quickly become the world’s leading MS treatment?
There is no single test to diagnose Multiple Sclerosis – it is a clinical diagnosis, meaning that the diagnosis comes about as a result of multiple tests and symptom analysis. When I was diagnosed an MRI, a lumbar puncture, and paralysis in my right arm and on the right side of my face were all taken into account. Although it took years to get to this point, you could say that I was fortunate to have such a clear case – many individuals have a very difficult time receiving a diagnosis while others may be incorrectly diagnosed with MS. The lumbar puncture, or a crude version of it, was developed in 1889 to relieve intracranial pressure for tuberculous meningitis. It has been somewhat refined over the years as many different uses for it were discovered, but the basics remain the same.
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.
I’m not a picky person. Really, I’m not. Normally I will tolerate any kind of abuse from a doctor as long as they give me accurate information about my health and write the necessary prescriptions. However, I’m now on my third neurologist. What happened?
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.