The last few years it’s been hard to tell if I’m climbing higher up the rugged mountain of MS or going down deeper into the barren desert of it. Whichever way you look at it, I can’t see the end point.
About three years ago my neurologist and I discussed changing my disease modifying therapy (DMT) drug to one of the new, top-tier, “aggressive”, infusion drugs. These new DMTs carried long-term risks that made both my husband and me very nervous and reticent to hop on the bandwagon. We hoped there might be other options in the pipeline and/or there would be more information about how others managed on them before starting them myself. This decision was not a zero risk scenario, though. By not taking one of these newer DMTs, there was a good chance that my MS would continue to advance and I would accrue more irreversible damage manifesting as additional physical disabilities.
Sure enough, I’ve slowly (thankfully) accumulated more disability while staying the course with one of the medium-tier drugs. I saw my neurologist this past Thursday and she had a very frank conversation with me about rethinking my options. She has earned my trust and loyalty over the years and has gone far above and beyond the call of duty for me on numerous occasions. So, when she told me that I have only continued to worsen, albeit slowly, and it was time to up the game to one of the top-tier drugs, I listened. Within the span of time between our conversation three years ago and last Thursday, over 100,000 people have switched to the newer drugs making the risk to benefit ratio much easier to see. The data looks good that the drugs have helped slow the progression of MS for a majority of people. They are not cures and nothing can repair nerve damage that has already occurred, but these top-tier drugs really do seem to the best thing out there by a pretty big margin.
The next step is to get everything squared away with my insurance–it’s already in process. I will then have to endure an 11 day regime of meds to washout the current drug from my system. That doesn’t sound like much fun!
We settled on a drug called Ocrevus because it seems to have the least scary possible side effects and a tolerable protocol. The first infusion will be half of the regular 600mg dose followed by the other half two weeks later. Thereafter, I’ll get the full dose every six months. To decrease reactions to the medicine, they will infuse steroids and an antihistamine before beginning the chosen drug.
It’s been a lot to wrap my head around. So much has changed within the realm of MS since being diagnosed 29 years ago. But for me personally, one thing has remained the same. I had no idea what the future related to this disease held for me back then, and I have no inkling how far it will go in the future. I suppose that’s fitting in it’s own way because the only thing MS has ever promised to be is unpredictable.
I’ll keep you posted as I go through this next step along the way.