I began getting Ocrevus infusions every 6 months in November of 2020. My first dose was split in to 2 parts to make it easier for my body to tolerate (this is common practice), and my first full dose was in May of 2021.
Ocrevus works by lowering your immune system in turn making it so your immune system shouldn't attack the white matter in your brain and spine as much. Your immune system is typically at it's lowest about 30 days after the infusion, and will slowly rebuild over the next 5 months.
To be honest, being on Ocrevus is a bit of a rollercoaster.....I don't really like rollercoasters (ask my Aunt, I screamed the ENTIRE time. She couldn't help but laugh ate me) but I can handle this one. Let me explain my Ocrevus process to help you understand.
The day of my infusion I need my husband to take the day off work to drive and take care of me. About 30 minutes before infusion time I need to take ondansatron (anti-nausea med), once at the clinic I am given tylenol, gravol, benadryl, and steroids before the Ocrevus can be started.
During the infusion process I feel alright, it doesn't take long after though for me to start feeling AWFUL. The best way I can think to describe it is, imagine your worst hangover ever, along with morning sickness, topped with a migraine, and the flu!
It is NOT a pleasant experience at all, but in my opinion it is definitely WORTH IT!
Luckily once I've slept and get up the next day I am feeling MUCH better!!
Once the worst of infusion day is over with I can start enjoying the benefits of the Ocrevus. For me the benefits include less extreme pins and needles, less exhaustion, less spasms, less plain.....a lot of my symptoms become less.
They don't EVER go away completely and I've learned to accept that for the most part, but less severe symptoms is very much welcomed in my world!
With my most recent dose of Ocrevus being in November of 2021 I'm about a month and a half into enjoying the benefits of my infusion. This also means that I'm about 3-4 months out from dealing with "Ocrevus Crap Gap".
What is crap gap?! Crap gap is a term used by MS patients to describe how they're feeling in the last moth or 2 leading up to their next infusion. If you recall, I explained that Ocrevus works by lowering the immune system so that it can't attack the white matter as effectively, and that it slowly rebuilds over 5-6 moths. Well, as the immune system gets stronger so to do the MS symptoms, meaning that the closer to infusion day I get the worse my symptoms get.
While Ocrevus can be quite the rollercoaster I strongly believe it has improved my quality of life, and is absolutely the right treatment option for me at this time *I haven't had ANY new lesions since starting Ocrevus*
Please discuss all of your treatment options with your medical team. This is my personal experience only.
No comments:
Post a Comment