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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • MichelleMichel
    2 years ago

    I, too, began the Ocrevus course in August (10 & 24). My first infusion is detailed as follows… Arrival at infusion clinic abou 10:30 for 11 am appt. Paperwork downloaded, filled out and brought with me. This infusion clinic has two large infusion areas, each with room for 3 patients and family member. They started my IV, checked my vitals, then drew up my “cocktail”. I was given 3 meds thru IV site one after the other with a small flush of IV in between, Solumedrol, Zofran (for potential nausea), and Benadryl 50 mg and 1 Tylenol by mouth. It didn’t take long to get “drunk”! After about 15 minutes the solution with the Ocrevus was started. I did a potty run about 1/4 way into the drip. Otherwise I rested, played games on my phone, checked Facebook, and slept in my recliner. It was cold, so they brought me a blanket. Snacks were available. Hubby went out and brought in lunch. Infusion took about 2.75 hours and add on a one hour observation post infusion. We left about 4-4:30. Rested all evening as I was still quite relaxed from the Benadryl! The next day woke with a little burning (like pre-sore throat) at back of throat. Around 4 pm felt flushed, red cheeks. No breathing issues or anything else noted unusual. Same experience as first with the second infusion. I still have my balance issues and various pains. However, I feel more alert and the edge is taken off those other issues. Very hopeful for the future of this. Friends and doctors both since these infusions have noticed quite a difference in my demeanor. Next infusion will be in February 2018 with a full dose!

  • MichelleMichel
    2 years ago

    Also I was finally diagnosed with MS in the spring of 1988. I am nearly 65 now. For the first few years I was on no medication, just tried to manage my stress by activity level. That worked for quite awhile. In the early 2000’s I started on Avonex weekly injections, which I gave myself. Starting in 2012 I began falling quite a bit, which resulted in some operations. I had something happen about once a year, which put a lot of stress on my body and didn’t give it a long time to recover. I began using a walker full time about 2 years ago. I am very hopeful for the success of the Ocrevus for me!

  • DaveR
    2 years ago

    It seems like everyone has different effects on Ocrevus. I personally have known I had Mas for over 32 years now and Ocrevus is my last hope of the approved MS medicine since I have taken all the others over time. The last 6 years when I get an MRI the radiologist because I have so.many scares on my brain and spine cannot see new damage but they always say I loose volume in my brain. Before taking the Ocrevus in May I received a booklet from Ocrevus saying I should call in which I did. I found out that there were 35 people in the New York area getting Ocrevus and I was the first west of New York receiving the medicine. They asked because they were unable to test the drug sufficiently after it was fast tracked through the FDA I agreed to giving them daily emails on how I felt. I read the information and drove down to Salt Lake City Utah to receive my Infusion. My wife came with me and the infusion itself went fine, but when it was over I started getting I’ll. They gave me drugs and kept monitoring me until I felt like the nausea deminished enough to drive home. They gave me a prescription for more medicine which I filled and took before we left Salt Lake and drove the 200 miles home. That night I laid down to go to sleep and was woken with the worse pain in NY head I had ever had. At first I thought my head was going to explode but once I took some pain killer it felt like my brain was expanding into my skull. I would now lay down in bed for a week after both half Infusion but with the second Ocrevus told me to give the nurse the nausea medication they prescribed to me to take before the infusion. I did that and I did not get nauseated after the second Infusion. The pain I had in my skull was not as severe as the first Infusion but I still couldn’t lay down to sleep. According to Ocrevus I was the only person that had this type of reaction but I am also one of the only people that have had it as long as I have that are on Ocrevus. I am looking forward in getting my MRI completed hopefully before the next Infusion in November just to see if is actually increased the volume in my brain. My mother had MS the entire time I grew up and she only took steriods to treat her MS after I was diagnosed. She lived until she was 82 but was in a wheelchair the last 15 years of her life. I became totally disabled at 40 years old after a colostomy surgery but I regained my ability to walk even though every neurologist I have seen all say I shouldn’t be able to walk. If this Ocrevus works to repair my damage I will be thankful but I will never allow myself to return to a point where I cannot function without some kind of walking aid. I am stupid and stubborn but even when played rugby in college I never had the kind of pain I went through with the Ocrevus Infusions. I pray and hope it makes a big difference with the damage on my brain because like I said it is my only course until they develope a new MS drug. Ocrevus is supposed to be the new miracle drug so those of us with MS just have to endure all the side effects and hope for the best. So far for me even with coming down with a sickness I did not have an exaserbation of my MS which in the past I would have. By that and now that the medicine is wearing off I had a little attack but nothing that I would say would be note worthy. I informed my neurologist about how I feel and we decide together if I need to take solumedrawl or just continue to workout to keep my body active. I personally hate pushing drugs into my body because all drugs have side effects and the MS drugs have already damaged my liver and organs enough I don’t need more drugs to damage them further. My wife has stayed with me through every pills and exaserbations and I felt terrible when Prednizone was the only drug used for MS relapses because of uncontrollable roid rage. When I was taking over 120 mlg for a week I didn’t sleep and I didn’t realize that my temper would act up until after I calmed down. The Ocrevus has not changed me emotionally and I just hope it is fixing all the damage I have obtained over the years. Ocrevus nor my neurologist had any explanation of why my body reacted the way it did so like I said I hope and pray the pain was for some good results with the Ocrevus. I am still alive and trying to enjoy every day and hoping I can life long enough to watch my one year old granddaughter graduate college someday.

  • Kelly McNamara moderator
    2 years ago

    Hi Angie,

    Thanks for sharing with the community! It’s so helpful to hear people’s experiences with the new treatment!

    – Kelly, MultipleSclerosis.net Team Member

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