My Ocrevus Toe Dip (the first 6 days)
I thought I'd share my experience with Ocrevus thus far. My first infusion was last week on Thursday and today is Tuesday, Day 6. I tried to quickly find other patients' accounts of their experiences and only found one truly detailed account, which I greatly appreciated. So in the interest of helping anyone who might want to read about other experiences, here is mine:
Before I begin, a little history about me: diagnosed with MS in May 2014. After 5 days of solumedrol, my doc put me on Tecfidera. I did really well on that, but had an MRI that showed a new lesion about 2 years in, and my doc said that meant the Tec wasn't doing what it should. She wanted to put me on something stronger. I'm 39yo, so between Tec and the "next thing," my husband and I wanted to try to conceive (that's a whole other story), so I went about 7 months without any meds other than Vitamin D, and during that time I had 2 relapses. So I'm ready to get on a new therapy that will help slow the disease progression. NO WHAMMIES!!!...
Thursday, July 13th, I arrived to USC Keck for my first Ocrevus infusion. My hands were full with my purse, my backpack, a half consumed cold brew from Starbucks, and my plastic water tumbler which I take everywhere with me these days. I checked in with security and they issued me a badge. I hopped on the elevator and checked in on the 3rd floor.
I had previously qualified for a copay plan with Ocrevus, and should only have $5 copays, but was told there is a balance of $60. They told me I'd receive an Explanation of Benefits in the mail, and at that time, I should enter my Ocrevus Copay card info and submit for payment. I signed a release saying the nurses administering the infusion are independent doctors (or something like that) and was escorted back to the infusion room.
My husband was parking the car, so I made sure everyone knew he was coming so that they'd know where to send him. My infusion room was only big enough for two patients. There was another patient on Lemtrada, I believe, with her husband and their dog. They had the curtain divider drawn to provide some privacy, which was nice.
My nurse came in and gave me the ole cup to pee in around 8:15am. I was wondering if they'd do a pregnancy test again before I started the infusion... I'm guessing that's mostly what that was about.
At 8:25am, the nurse came back with two Tylenol to swallow. She asked me a few questions about my medical history. Did I have asthma? Did I have headaches, etc. By about 8:30am she had the IV line in place (she did a great job!) and she administered Benadryl to the IV. WHOA NELLY. It burned a bit, and I asked her if it is normal to burn, and she nodded yes. I instantly felt like someone was sitting on my chest. My head felt light, and I wasn't sure if it was nausea or something else. The nurse asked if I felt tired. I told her no, that I felt almost sick. I took deep breaths and I gulped water. Within a few minutes, everything settled a bit. I did feel a bit woozy from the Benadryl for the remainder of the day.
I think at the same time as the Benadryl, as well as before and after, there was a constant drip of Sodium Chloride to assist with hydration and keeping the line flushed. The nurse had been telling me the medicine wasn't ready at the pharmacy, so I think we had to wait a little longer than usual before the Benadryl was administered. But once the Benadryl was in, the Solumedrol was next. I think if you are getting on Ocrevus, odds are high that you know exactly what Solumedrol is. Luckily I did have jolly ranchers with me in my "snack" pocket of my backpack (I'd packed a few Larabars too), so I sucked on one as soon as my mouth began to taste like metal. The nurse brought me a warm blanket...my FAVORITE PART!
I turned on my binge TV marathon (my mama got me HOOKED) which I had downloaded to my phone from Netflix. I also got out my battery charger and had that ready since my phone battery is pretty depleted right now. The Ocrevus began. My body did pretty well. The nurse came in to check my vitals throughout. She also brought me waters, juice, and chips at some point, which I appreciated, and took her up on. I NEVER eat Cheetos anymore, but I figure if my nurse is giving them to me, I'll eat them! About half way through the infusion, I suddenly began to wheeze when I took a deep breath, and the outside perimeter of my face became itchy. I had a few hives. I reported that to the nurse, and it all cleared up within a few minutes once again. All of those fluids kept my bladder busy. I think I got up to use the restroom about five times. The Lemtrada lady only went to the restroom ONCE during the six hours I was there!!! It blew my mind. I just think I have a tiny bladder.
By 1:20pm, the infusion was complete, I had watched 3 episodes of my binge TV show, and my husband had completed reading almost an entire book. The nurse monitored me for a full hour after that. So by 2:30pm, I packed up my belongings, told the nurses see you in two weeks, and we headed to the car. I definitely felt weak and fatigued. My knee caps felt pain when I walked. I wondered if it was from lounging for so long. I do think I could have driven myself if I had to, but I was very grateful to have my husband driving me home. Once back at home, I rested for the afternoon, and took a Pepcid around 5pm. I ate dinner around 6:30pm, and noticed when getting ready for bed at 10pm that I had a slight headache.
When I woke up the next morning (Friday), I did not feel great. I had a headache but it was almost as if I felt my brain simmering a bit. It was an all over, kind of dull ache. So I decided to stay home and rest, but I did feel well enough to run a few errands early in the day. I took a nap way later in the afternoon.
During the weekend, I kept up with pretty normal activities (drove to visit family and have some beach time) and only had a moment or two of feeling like maaaaaybe I was overdoing it. I feel pretty fatigued today, after almost 9 hours of sleep last night. I think maybe I pushed myself too hard over the weekend. Overall, I'm glad to be starting Ocrevus. I have seen people reporting that they feel better on this treatment than they ever have, and I'm hoping the same will go for me.
How many specialists did you see before finding "The One"?