Can you limbo? I have never tried but I once again find myself in limbo land with MS treatments. Therefore I have to assume that I'm good at limbo. This is a post about my ongoing relationship with the disease modifying drugs for MS.
At the beginning of September I finally gave up on Rebif, my second try of the "front line" disease modifying drugs for Multiple Sclerosis. There are four "front line" drugs, and three of them are pretty much the same. I had to stop Rebif because after months of on-again-off-again monitoring of my liver, my neruo decided that the long term health of my liver was more important than the minimally modifying nature of the Rebif.
Having tried two main treatments without success, I became eligible for a second line treatment - the daily pill, Gilenya or the once a month infusion of Tysabri. My opinion is that either of these treatments are considered to be secondary because they are newer and each pose certain risks to the patient (risks greater than the front line four). A screening process is necessary before beginning either Gilenya or Tysabri and I failed one for sure.
I am not eligible for the daily pill as an abnormal EKG, discovered during the screening process, is a definite contra-indication. I also tested positive for JC virus anti-bodies which is a warning for the once a month infusion (JC virus can lead to PML, a brain infection).
Are you confused? I am.
I have an MRI scheduled in December and a follow-up appointment with my neuro to discuss the risk involved with Tysabri. This means that Tysabri isn't completely off the table, but it can't be taken without dialogue.
Not all types of MS offer the opportunity to treat the disease course with a disease modifying drug. Having relapsing-remitting MS, I have the chance to lessen relapses with drugs. And I'm afraid that maybe my chances have run out. If you have been following along on my journey, you may remember that I don't like to not be on a drug. For me, as painful and scary as the drugs can be, they fit my lifestyle. I don't feel that I am in a position to research and introduce holistic or alternative options. These require energy, thought and financial resources that I don't have.
I'll let you know how it goes.