I received a comment yesterday, on an older blog, about my Ocrevus infusion. What I found interesting is she’s had multiple sclerosis for 36 years and she’s first going on a disease modifying therapy. First of all I have to say, 36 years within any DMT, that is amazing!!! I know other people like that or that have stopped taking any of the disease modifying therapy drugs for a variety of reasons. I never had that option.
My multiple sclerosis was bad right out of the gate. My entire left side went numb, was atrophied. To this day I still don’t have normal feeling on the left side of my face. It was so severe and it was so quick. It started on Friday and by the following Friday I was sitting in a wheelchair unable to walk. Starting a drug therapy wasn’t an option only which one was. Back then there was only Avonex and Betaseron. I started with Avonex but couldn’t handle the injections and how sick I felt for a couple of days after I dosed. I switched to Betaseron, but I remember many nights waking up with severe chills, showering in the hottest water at 2am and it might have been summer. It didn’t matter, Betaseron also made me sick and the injection sites were always sore and red. I was basically on Betaseron for 12 years. I had a short stint of trying Rebif and shorter still Copaxone. When Gilenya hit the market I was done with shots.
Even on the DMT I had on average 2 relapses a year. In 2014 when I was switching from Gilenya to Tysabri I was off all meds for a total of 2-3 months. That was all it took and I had my last major relapse that truly disabled me. I never had a choice with the drugs. Even now, I’m partially secondary but I’m still probably partially relapsing, I can’t risk not taking anything. It’s just unfortunate that I continue to slowly get worse. Without the DMT, I’d be completely worse. I must say I’m grateful to my doctor who never gave the option 20 years ago other would you prefer to go on Avonex or Betaseron. I’m grateful these drugs were around to help me. For all of the readers that didn’t or don’t need them I think that’s amazing too. I love hearing stories like that and I’m grateful for yesterday’s comment.