I had my neuro appointment early last week and was hoping to get started with the procedure necessary to start a new disease modifying therapy. Unfortunately, the FDA has set back the release of ocrelizumab, due to some issue that they want to reasearch involving the packaging process. The new "expected" FDA decision is now set for March 28.
My neuro doesn't want to put me on a different DMT between now and then because they all have "wash-out" periods (the time you must wait between drugs to make sure that the one you're switching from is all "washed out" of your system). She "thinks" the wash-out period for Tysabri is 6 months, if that is the case, I wouldn't be able to start a new drug until May, anyway. After the FDA decision, there can be a considerable wait to start ocrelizumab. Our local hospital will have to order and recieve the drug, and all of the infusion/nursing staff will need to be trained on the administration procedure and whatnot. Apparently the hospital is notoriously slow at getting new drugs ordered. There is a neurologist in a town a couple of hours away that has already been through the training, so my neuro did say that she could just send me to him for treatment until everything is all set up locally. She was very laissez-fair about the fact that I will be off treatment for several months. Her exact words were "When/if you relapse in the meantime, we'll just do the IV steroid thing". Like it's no biggie. Of course, she's not the one who will be feeling like crawling out of her own skin, eating everything in sight, not sleeping, etc. during a 7-10 day course of steroids by infusion. Not to mention that each relapse leaves behind lingering effects. My vision has been really wonky for the last few weeks, especially when I am fatigued in the afternoon and evenings. Sometimes I can't see well enough to read or write. And speaking of writing, it's becoming more and more difficult due to the weakness and spasticity in my dominant hand. My handwriting is becoming atrocious! :( When I shared this with my doctor she didn't seem concerned at all. It's just the natural progression of the disease, I guess. Awesome. L
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