Skip to Accessibility Tools Skip to Content Skip to Footer

My First Ocrevus Infusion

I feel like I have been missing in action recently, and I would love to catch everyone up on how I have been doing! Up until about a year ago I was doing very well on Tysabri, and it seemed like my relentless wave of relapses were finally in check. However, eventually, my MS started to rear its ugly head again. It started with an episode of facial numbness and optic neuritis, followed by leg weakness a couple of months later. After an MRI confirmed that I had new spinal cord lesions, my neurologist and I decided it was indeed time to move on to the next DMT, and we were hopeful that Ocrevus would be a good fit. However, the FDA approval process was delayed, and it became clear that we would not have access to the medication soon enough. Ultimately we decided to use Rituxan “off-label,” hoping that Ocrevus would be approved in 2017.

Trying Rituxan until Ocrevus was approved

Rituxan is very similar to Ocrevus (you can read my overview of the medication, including how it works and potential side effects here), and I initially had one infusion followed by another two weeks later. I’m not going to lie, the first round was not a walk in the park! However, I promptly reported my side effects to my nurse who responded quickly to minimize them. First, my blood pressure became too low during the infusion, which was treated with IV fluids. After a couple of hours, I started getting a red, hot rash on the palms of my hands and face, which went away after an extra dose of IV Benadryl. I felt wiped out and had a headache for a few days afterward as well.

After the infusion side effects cleared

However, once the infusion side effects cleared, I really started to see a difference. My fatigue and bladder symptoms improved, and I was able to start exercising to strengthen my legs again. Most of my symptoms stayed the same, but most importantly, they were not getting worse. Overall, I was very encouraged by my results, and when Ocrevus was approved in March 2017, I was excited to give it a try!

My first Ocrevus infusion

I just had my very first Ocrevus infusion, and since I know many people living with MS are going to be facing their first infusions I wanted to share what my experience was like.

Here is my journal from that day:

7:00am- Time to wake up and get to the hospital! I learned from my Rituxan infusions that IV Benadryl makes me very groggy, so I was smart enough to have a friend drive me this time. We pack a duffel bag with a sweatshirt, blanket, laptops, phone chargers, and snacks before heading to the hospital.
8:00am- I check in at the front desk of the infusion center, get my wrist band, pay my copay, and head back to the infusion room.
8:15am- My all-star MS nurse checks my vitals (blood pressure, heart rate, and temperature) and places the IV in my arm, aiming for a vein that leaves my arm free enough to work on my laptop and eat.
8:30am- I take my pre-medications that will minimize infusion side effects – oral Tylenol and Benadryl, and IV steroids. The nurse calls down to the pharmacy so they can prepare my Ocrevus infusion.
9:30am- My Ocrevus arrives from the pharmacy, and my pre-medications have had the chance to kick in. Time to start the infusion! My nurse checks my vitals, hooks up the IV, and I start binge-watching House of Cards season 5 to distract myself.
10:00am- I’m 30 minutes into my infusion, and my blood pressure has gone down a little bit, but is still within normal range. I have not had any rash or itching– so far so good! My nurse increases the rate of my infusion.
10:30am- Still no side effects, my vitals are all normal, and House of Cards is excellent! My nurse increases the rate of my infusion again.
11:00am- I had some mild itching in my arms and face after increasing the rate a second time, but not badly enough to warrant more Benadryl. It subsides in about 15 minutes, and my vitals are still good.
11:30am- LUNCH! I’m hungry, and thankfully, my friend is there to grab us some food. The infusion continues to be uneventful, and I have not had any more itching.
12:30pm- All done! My infusion is finished and my vitals still look great. My nurse disconnects my IV, but leaves it in my arm. I have to hang out for 1 more hour to make sure I don’t have any side effects. They continue to check my vitals, and I have time for one more episode of House of Cards.
1:30pm- My nurse takes out my IV and I am free to go! The Benadryl is definitely making me tired, so I’m happy to have a ride home.
2:00pm- I’m back home and ready for a Benadryl induced nap! I spend the rest of the day relaxing and napping on and off. Overall, the day went very smoothly, and I’m thankful!
7:00pm– I’m starting to get a dull headache and my face feels flushed, so I take another dose of Tylenol and drink a couple of glasses of water.

Ocrevus infusion side effects after an earlier dose of Rituxan

I can’t say for sure if I had a such a smooth infusion because I just had fewer side effects with Ocrevus, or because I had already gotten a dose of Rituxan. When you first get an infusion of a medication that depletes your B-cells, it is not uncommon to have an infusion reaction (called cytokine-release syndrome), and for subsequent infusions to be easier. Whatever the reason, I am happy it went well and am looking forward to infusion #2 next week!

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

  • doctp12
    5 days ago

    My neurologist took me off of Ocrevus, said the leg paralysis was “cytokine sickness” Ocrevus surpasses mainly B cells and the “Destroyed” cells release cytokines, causing inflammation, if I understood him correctly.
    Now back on Tysabri which attaches a small protein molecule to the “T” lymphocyte, preventing it from crossing the Blood brain barrier.
    Best to speak with your Neurologist.
    Treatments of many cancers are by “targeted chemotherapy and shifting away from traditional IV chemo agents.
    Targeted chemo boosts certain Immune cells to target only the specific cancer.
    Are we shooting ourselves in the foot by knocking out B and T cells , some of which we need to prevent cancers?
    We are so much in the dark about the immune system.
    Anyone, please join in.
    Tom

  • doctp12
    1 week ago

    RRMS began at age 59, never any prior symptoms.
    ‘Was at work, a very non stressful day when I suddenly wend blind for 3 minuets eyesight returned but with sever double vision and total bilateral loss of leg motor function!
    I have always been an athlete, All American, Full scholarship to college and invited to the Olympic training camp, ran 5 full Marathons.
    Got a ride home and figured at my age, a brain tumor, not a stroke since it was both legs and both eyes.
    Next day saw my neurologist, got a full Neuro exam and MRI with Gado.
    He is a world renowned MS expert.
    Results: RR MS with multiple lesions, no option neuritis but lesions in the cerebellum and pons causing eye changes, posterior to optic chasm, where the optic nerves cross and many lesions everywhere and of course, the corpus callous.
    5 days of high dose steroids and symptoms and started on Tysabri. Symptoms have lessoned after 8 years but still leg weakness and all muscle twitches and mild eye issues. Significant short term memory issues.
    Out comes Ocrevus and neurologist puts me on it.
    After the 2nd half dose, I could not move mu legs again!
    More steroids.
    Wait the required time and get a full dose and leg paralysis, total body itching, and more muscle twitching and painful paralysis of legs.
    So, Dx, was cytotoxin sickness! hydration and rest but my leg spasms, weakness and pain persist. More blood tests and back on Tysabri, symptoms persist but less so.
    Tysabri affect mainly B cella and Ocrevus mainly B cells. Why the Cytokine sickness with Ocrevus and is it common only with Ocrevus and B cell inhibition?
    All info and experiences are appreciated!
    Last question, does weight lifting and running get me stronger and help regain balance or does it incite more inflammation leading to relapses?
    Ty all,

    Tom.

    Editor’s note: adjusted to comply with community rules.

  • doctp12
    7 days ago

    hi Donna, ty for the info, much appreciated. My neurologist stopped the Ocrevus and put me back on Tysabri, infused a week ago. Still feel lousy, esp. short term memory loss and some leg weakness.
    Just don’t know if this is my new baseline or residual of cytokine sickness…time will tell.
    Really depressed about the whole thing. He increased my antidepressant med but no real change.
    Does weight lifting strengthen leg muscles or increase inflammation which can cause a relapse?
    Tom

  • DonnaFA moderator
    7 days ago

    Hi @doctp12, I see you have had some response from the community! I thought I would share this article which gives a pretty full description of how Ocrevus works. There are other cytotoxic drugs used to treat MS . I was unable to find a lot of concrete information on cytokine sickness, but found some information that said if you experience drug induced nausea, motion sickness and a few other “every day” reactions you might be more prone to cytokine sickness. I hope that answers some of your questions, or at least gives you some points to bring to your health care team.

    Please do let us know how things are going, Tom. Sending wishes for relief. -Warmly, Donna (MultipleSclerosis.net team)

  • jamesc713
    4 weeks ago

    I took my first dose, split into 2 infusions, at about 4 1/2 hours each. They scheduled me for my next dose about 6 months from now. I feel great since Steroids are given in conjunction. There were no side-effects that I could see, and just go through all of the assistance programs, just $10 for each infusion or $70 because I have not met my out-of-pocket expense with my insurance.

    The daily, and weekly injections (self-administered) were not a good option for me personally since I hate giving myself shots. When I found out about Ocrevus I jumped at the chance. After my 2 infusions for a full dose, I feel great and I don’t have to worry about MS medication for the next 6 months!

  • castilsh
    6 months ago

    Hope to hear your experience and how you are doing and how your treatment is doing.

    I have started my full dosage treatment this month. In November, I had a two part treatment .

  • omgck
    2 years ago

    Hi Stephanie,
    How did your second infusion of Ocrevus go? My doctor wants to put me on Ritxan but I am worried about the side effects. In the past I had a severe reaction to Rebif after 2 yrs on it.

    Hope to hear your experience and how you are doing!

  • cagriggs
    2 years ago

    Hello – glad to read your comments about first Ocervus infusion – I had my 1st treatment 7/17 & I had no problems! 2nd one is scheduled for 7/31st. Interested in how you are doing on Ocervus. Thanks, Connie.

  • talmadgamy
    2 years ago

    Hi Stephanie! I’m a patient of Dr A in your practice. If you go to the local infusion center, we might meet! I am stable on Tysabri for 4+ years. Thanks for your blog on Ocrevus. I’m glad there is something beyond Tysabri for when I need it!

    Best wishes on your next infusion!
    Amy Talmadge
    Dx January 2004
    Rebif, Copaxone, Tysabri, Gilenya, Rebif, Tysabri

  • Poll