The day after my diagnosis I went to the neurologist’s office to pick an MS drug. I still hadn’t talked to the good doctor but knew that early treatment was the only answer for me. From the research that I had done, Rebif seemed like the best choice. Three shots a week, into the fat sounded better than some of the alternatives. It was also the highest dose of interferons available. I thought more was better in this case. The Rebif nurse came on Monday, July 10th to train me on the injection therapy. I was excited to be taking control so fast. Until I saw all of the medical equipment laying on my kitchen table, I thought I was in control. The reality of the needles and vials and alcohol wipes was too much. I had the same thought I had when my doctor wanted to review my MRI results in person. “I am so screwed.”
I made it through the training and did my shot and wrote all about it in my journal. It was a very small dose so the “flu like symptoms” were not all that bad. As I worked my way up to a full dose over the course of a month those “flu like symptoms” turned into “malaria like symptoms”. The Rebif was making me sicker than MS. Everyone assured me that I would get used to it, that the symptoms would go away. When I told the nurse that trained me how sick I was and how I had to take anti-nausea meds to get through it, she was shocked. She had never heard of this. When I talked to a rep at MS lifelines, her response was, “This is awful, I hear about it all the time but sometimes it gets better.” Obviously, she wasn’t working on commission. At the beginning of September, I could not give myself another shot. I needed to feel well and decided to look for another answer. One of my last injections was at a Willie Nelson concert in Park City. I am pretty sure I was doing the most expensive drugs at the whole show!
I had five or six injections left in my kit. The medicine is expensive. Rebif was almost $500 a month. That was my co-pay! While I wanted nothing more than to shoot the poison down the sink or sell it on ebay, I wrapped it up and gave it to a women I know that had been on Rebif for two years. She was thrilled!!
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