I’d like to start my blog by saying this is just my story and I’m not advocating for anyone to do anything other than listen to yourself in making choices regarding your life and MS. I was diagnosed with MS in 2010 and have been on medications since a few months after diagnosis. I selected an injectable medication at the time based on lowest side effects, ease of use for travel with work to remote locations (expiration outside the fridge) and so forth. This medication was injected into deep fat layers under my skin. I wanted to live my life the best way possible with as minimal interference. Adjusting to the drugs was difficult – the huge itchy welts that didn’t go away etc but I was committed and after about 3-4 months of this I got through it and things became better. It took much out of me to deal with this and I won’t down play the difficulty. I felt, at the time, I was set for a long while despite the nurses forewarning “some people have injection site issues and cannot tolerate being on injectables in the long term and some people have no issues!” I never missed taking my medications and I depended on this as one of several things to manage my MS. After 2 years of being on my medication, I observed the dreaded injection site reactions – the lipoatrophy (death of fat layers) first in my arms and then finally in other injection locations despite vigilant rotation of injection site locations. I realized my time on these medications was slowly coming to a halt and this issue essentially eliminated a whole suite of other drug options (because they required injection into the same type of tissue).
Last year I set a timeline in which I would chart my next steps in moving forward. I gave myself a year to figure things out. I had to make difficult decisions and I wanted to be informed about what was next for me – at first it was mass learning about which drugs were available. I learned much about the oral medications coming on the market and of their side effects. The reality is all the drugs have side effects and all were harsher than the medications I was on. I spent several months feeling like my only option was to change drugs and I was set that this was my path forward. I was scared to make change –any change that might make me take a turn for the worst. To me no drugs was fear and thus not an option. (more…)