Ocrevus and Me, Part 2: Infusion Time and Side Effects

Ocrevus and Me, Part 2: Infusion Time and Side Effects


Editor’s note: This column is second in a series. Read the first part here.

Just you wait! How many times have we heard those words or said them to someone else? I find that now it’s my turn to wait. What I’m waiting for is six months to pass until my next Ocrevus (ocrelizumab) infusion. When that wait is over we should know if ocrelizumab is the right drug for me and if we see a noticeable improvement in my multiple sclerosis (MS). I wrote about my decision to try this newest approved therapy in the column “Ocrevus and Me.”

I’ve recently completed the two IV infusions of Ocrevus, and while I’m waiting, I thought I would share my experience so far and some comments from my neurologist, Aaron L. Boster, MD, OhioHealth Neurological Physicians, about his expectations for this drug.

My worst side effect

Most of us want to know what to expect with a new drug: Will there be side effects? What does the infusion feel like? And much more crosses our minds. I can tell you that my worst problem from having these two doses of Ocrevus, done two weeks apart, was boredom. Yes, I was bored silly while waiting the projected six hours to complete the infusion. Fortunately, I had no reaction to the drug, and my time was actually closer to five hours because we didn’t have to stop at any point and readjust the dosing. Where I get my infusions is similar to an isolation cell with lots of privacy, but includes a television and Wi-Fi access. I sat by myself watching the clock and waiting to be released so I could head home.

It’s important to note that not everyone is fortunate to have no problems with the introduction of ocrelizumab into their body as I experienced.

Infusion time and side effects

During my second infusion appointment, I asked the nurse what types of side effects she saw when people start Ocrevus. According to her, the only one that is consistently showing up is an itching sensation some people have, which appears to be a form of allergic reaction and is treatable. This matches the information gathered in all of the clinical trials for ocrelizumab. She added that the worst is when people get an itch they can’t scratch inside their ear. When a reaction happens, the drip rate for the ocrelizumab is slowed down to allow the body to readjust. We talked about this, and according to the clinical trial experience, about 40 percent of people reported this problem with itching. She said they have seen a slightly lower rate in their clinic. Fortunately, I had no sudden need to scratch a hidden itch.

Why does it take so long? My infusion involved time to do my paperwork and get my IV line placed, a half hour to allow a small dose of prednisone and Benadryl to get into my system, time to get the ocrelizumab infused, and then an hour observation period after it was all done. The ocrelizumab is set to drip at a slower rate and then increased over time if it is well-tolerated and no reaction such as itching occurs.

This all sounds like a chance to take a nice rest and sleep, but every 30 minutes the nurse came in to check on me and to adjust my dosing rate, so there was no opportunity for uninterrupted napping. The only longer stretch of uninterrupted time can be at the end, for the one-hour observation required to be sure there is no delayed reaction to the drug.

Checking with an expert

Afterward, I had the opportunity to talk with Dr. Boster about his thoughts on ocrelizumab.

“By definition, new is exciting, but I think it has to be applied in the real-world settting. I’m not just using what I know from the trials I conducted, but also my 10 years of knowledge with Rituxan, a drug that is very similar,” Boster said. “We can borrow a lot of the Rituxan profile and apply it to ocrelizumab. These experiences with the trials and Rituxan allow me to be comfortable with this treatment. We have lots of evidence about the safety profile of this drug.”

How fast does ocrelizumab work?

I shared with Boster that I have read others’ comments about feeling so much better immediately after receiving Ocrevus and asked what the realistic expectations are to see a difference.

“With relapsing MS I think the curve starts to split at three months, where I feel we could start seeing a noticeable difference. With progressive MS it’s harder to tell in the real world because in the absence of relapse events it is hard to spot a difference,” he said.

Most people with progressive forms of MS do not experience relapses and changes often are very subtle.

“We will do an assessment every six months, which is a natural fit because we have you on a therapy that we give every six months. It is reasonable to do an MRI after the first six months to look for evidence that it is working. Then somewhere between six and 12 months we can look at it clinically to see if it [ocrelizumab] is working. But it is not necessarily this straightforward,” he added.

I asked about reports that people felt better immediately, and he said, “I love that people physically feel better. We have to look for that objective experience [from the patient], as well as the subjective from all of our exams. You know from experience that you can have a drug treatment and almost immediately feel better even if it doesn’t yet change your clinical exam or MRI.”

A game-changer

“I believe that Ocrevus is a game-changer and it resets our expectations for treatment of progressive MS disease states. I think it has potent anti-inflammatory effects,” Boster said. “A truly transformative multiple sclerosis treatment is something that changes the way we approach MS, and I think that this drug fits that description,” he added.

Do I feel better? I actually think I do, and will share examples later. I also know the power of the placebo effect and how powerful that can be, so I want to reserve judgment. For now, I’m content to wait for the next six months to pass and see how I feel when I next engage with Boster, and what evidence he finds during his exams.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

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40 comments

  1. Donna Marie says:

    So we are the results, thats the way it has always has to be, good or bad and trial and error! Aren’t there any convicts with MS available to try this on?

    • Laura Kolaczkowski says:

      Actually rituxan, a form of this drug, has been used over twenty years so we aren’t an experiment. How my MS will respond is the big question. -laura

  2. Emil Torres says:

    Had first 6 hour infusion of Ocrevus yesterday when should I start seeing the benefits? next one scheduled 7/25 then every 6 months

    • Lisa says:

      Hi

      You’re very lucky that you haven’t experienced chronic daily nausea since your Ocrevus because although the medicine has helped my walking, this stinks. I have my full dose of 380 mg in November. Have to take stuff everyday for this nausea. The Ocrevus has made me feel much stronger

      • Laura Kolaczkowski says:

        That sounds horrible. I’ve not heard of this side effect lasting. I hoe it gets better, soon. -Laura

        • Lauren says:

          Too new. There are differences. My number 1 concern is the cancer scare. Until they can prove that it was not caused by drug. I will stick with Rituxan.

          Taken from the Are Rituxan and Ocrevus similar argument web page:
          IMSMP,(world renowned NYC research center on MS) in its March 31 statement, called the number of cancer-affected patients in the Ocrevus-treated trial groups “alarmingly high” — a stark contrast in wording from Genentech.
          The IMSMP also noted that an early trial of Ocrevus in rheumatoid arthritis was cut short when patients developed life-threatening infections.

    • Laura Kolaczkowski says:

      I understand it’s a good four months or so to see something that would be apparent on clinical exam. So, we wait… -Laura

    • Kristine Visage says:

      I am slightly concerned that you have the 2nd half of your infusion scheduled just 9 days after the 1st half. To my knowledge, they are to be 2 weeks apart.

  3. Pam Dye says:

    Like you, I just had my second infusion two weeks ago so it is a waiting game. I note any new signifant or minor changes in my condition. Keep a journal so you can follow up with your doctor. I have PPMS so the changes will be subtle. Good luck with your journey and here’s to hoping for positive outcome.

  4. Patricia S Knock says:

    My MD said I had to have an active lesions to start the medication! I have had MS since 1990 and just now getting progressively worse.
    Is it true that you have to have an active lesion to start the medication?

    • Laura Kolaczkowski says:

      I have not heard that one …. I do not have active lesions right now and that was not a requirement for me. We know that MS activity happens at multiple layers of the brain and active lesions are just one indicator of progression but don’t tell the whole story. You might either have this conversation again with your neurologist or get a second opinion. -Laura

  5. Anita says:

    Diagnosed with PPMS 2 years ago. I am currently not on any DMT. I have some lesions on brain and none on spine. My issues are left leg foot drop, hyperextended knee, balance, fatigue and heat sensitivity. I can do things as I used to just at a slower pace and with rests in between major tasks. My doctor talked to me about this drug. Advised I would need a spinal tap to get insurance approval. I am excited and reluctant to start any type of drug therapy. I wish you all best of luck and hopefully at some point they will find a cure for this disease!

    • Laura Kolaczkowski says:

      I can’t understand why you would need a spinal tap done. I’ve not heard that from anyone – maybe the doctor thinks the tap is needed to prove you really have MS? – Laura

      • Bob says:

        Laura,

        In my experience there are several ways to confirm a DX of MS. Generally you need to have had an attack with in a 3 year period and either a positiive MRI or a positiive spinal tap. Some say if you haven’t had an attack but have a positiive spinal tap and MRI you can get the dx

    • Polly Sears says:

      Hi Anita !
      I have had MS for over 35 years, and, have never been on any DMT either. My neurologist is great ( Brigham and Womens MS Clinic ), and, wants the decision to ultimately be mine , after we go over the pros and cons. The breast cancer issue is a major concern. I still walk , altho the past 3 years I do use a cane if going out ( for those darn curbs and cobblestones ! ) His recommendations at this point are Aubagio, or, Ocrevus. I am also a peer support counselor . People that I talk to are very unhappy when taken off Tysabri. Not an option I would take, but , they said they felt totally normal while on it . I just hope we all find the right route while dealing with this strange and unpredictable disease !! Good Luck Every One !!

      • Debra says:

        I miss Brighams! Dr Houtchens was great. I only came off Tysabri on her advise due to JC development & went to another then onto Tec. Ugh. Most recently 1 yr drug vacay living in humid Houston:)
        So now the new drug story starts…Thursday. And Im counting on it. The fatigue is bit much now.

  6. BRENDA BLAKE says:

    I completed my 2nd infusion June 27, 2017. I have minor itching, less than with Techfidera. I had nausea with Techfidera also. No nausea and less itching is an improvement. Choosing not to doubt this new treatment will keep me from anymore relapses.

  7. merlin says:

    Well we will find out next week hope to see some results but we all have to be patient We MS people know about that 2001 when I got diagnosed and hoping this is the answer.Thanks for your input on this,Merlin

  8. nancy ungar says:

    I have ppms, edss about 7. I had my first dose 5 days ago. The ocrevus produced spasms in my arms and shoulders, and especially in my bladder. They disappeared when the 50mg of benadryl rendered me unconscious. When they woke me up to leave I was too weak to raise a finger. Luckily my aide is strong because lifting me was was like handling lead
    spaghetti. The bladder spasms continued until I took a valium. I have been very weak, tired and thirsty but today I am almost back to my usual weak, low stamina self. FYI, i am often part of the .2% to get side effects.

  9. Irene Berman-Levine says:

    I find the discussion very helpful and thank all for participating. I have RRMS and have done very well for someone who has been diagnosed 16 years ago. I LOVED Tysabri but my viral load is higher than Dr. Jeffrey Greenstein has ever seen (around 3.9 – repeated several times) so he advised changing. At that time I changed to Copaxone as we were waiting for Ocrevus approval. Had MAJOR MAJOR relapse after six months on Copaxone so he put me back on Tysabri. Getting my first infusion of Ocrevus in September and I cannot wait. (doing my six week wash-out now so nothing for six weeks).

    I commute two-hours to Dr. Greenstein in Philadelphia, as he is FABULOUS and has kept me functional for 16 years. However, someone told me I was not going to feel like taking a train, a subway and then a bus to his office. So I hate to waste other people’s time but I will probably take the train there and then family will drive in towards the end to pick me up. Was wondering if anyone else had full energy afterwards that they would have the energy to commute home?

  10. Linda Jordan says:

    I had my first round of Ocrevus on 7/14 and 7/28/17. No issued whatever during the infusion process but I was given a 500mg Tylenol along eoth 100mg of Benadryl and the needed cortisone meds. My only symptom so far is fatigue and waking up tired. My leg spasms prior to the 1st infusion were ridiculous. My toes still remain numb but overall I feel better as the infusions seem to have calmed things down a great deal. Still some weakness in my legs but I am now able to walk further and am able to do things for a little longer period of time. My next and full dose is scheduled for 1/26/2018. I’m excited and also anxiously playing the waiting game.

  11. Kelli Sharp says:

    Scheduled for my first OCRE infusion in the morning. Prepared for the worst, hoping for the best. Copaxone injections aren’t working anymore and JC virus is present. I just want to feel normal again. Whatever that means. Seems such a thing of my past, I don’t really remember what normal feels like. This fatigue and grey cloud that hovers over me daily can go away any time now. Wish me luck. 😊

  12. Karen says:

    My cousin is going for her first infusion of Ocrevis today. She is newly diagnosed and this will be the first drug she is trying. It was very helpful reading all of your reviews. My question is, does this drug slow down PMS or just help with the symptoms of this disease? Will she ever be able to function once again on her own?

  13. Paula says:

    I’m very concerned about the infusion reactions that I’m reading about. There have been many going to the ER either f Ron infusion site or hours later. The PML in Germany is concerning as well. I have knowledge that this patient had MRI five days prior to last Tysabri and had two doses of Ocrevus in April 2017 and the MRI in May showed PML. The general public doesn’t have this info…why not? Back to the infusion reactions, my Neuro also stated that a US patient died hours after first Ocrevus infusion. Again patients are owed full transparency when it comes to risks and data from the large numbers seeking this treatment. My info comes from a very high profile MS Specialist.

    • Jared says:

      I think you need to check your sources of information. If someone died in the US from Ocrevus it would have hit the news. Perhaps you are a conspiracy theorist but I don’t buy it. Sort of like the “doctor” and everyone who told me its not MS its chonic Lyme… yea ok… Anyway I had my first round of Ocrevus yesterday and I’m doing just fine. I’m not saying it cant have bad side effects or someone might not die; everyone reacts differently. Just don’t buy everything you hear.

  14. Linda Walker says:

    Had my initial two doses of Ocrevus in July. Now the waiting starts! I’m afraid to admit that I actually an two weeks with no issues. Can that be? Looking forward to 6 month dose to really measure a difference. Trying to stay positive until then… Thanks to everyone that shared their experiences, it really helps. Keep it up–PLEASE!

  15. Lori Gutzmann says:

    Hello, It’s time for me to decide on a med change. I started with Copaxone when I was first diagnosed in 2005. I then changed to a MS study med in 2011. Was doing well with that. however my lung function was getting affected so they decided to take me off of the study. So I look for something that will not have any ref to ill affects to my breathing.
    So, now I have time to do some research on me. what med. trying this out is new for me here at this site. so ty for your time.

  16. Trisha M says:

    I started on Ocrevus 9/25/2017 I have to go back for my second dose on 10/13/2017 i’m really looking forward to seeing some changes around my six month dosage. If anyone else have any advice or stories and feedback I would greatly appreciate it so I would know about what to expect

  17. Margo casey says:

    I had my first dose ocrevus yesterday – easy with benedryl-prednisone. And no side effects. It is really great to read comments – please keep them going. Margo

  18. Patsy Roy says:

    I had my first infusion of Ocrevus 2 weeks ago. I had no side affects. I was suppose to get my second infusion today, but I have several other health problems and decided not to continue the Ocrevus. Is that a dangerous thing to do?

  19. Shauna Abney says:

    Completed my 2nd half dose on September 29, 2017. The nausea, up to this point, has been annoying but tolerable with medication. Today, however, it has been horrible! Dry heaves and stomach pain accompanied it this morning and everything I try to eat makes me even more nauseated! I hope this goes away soon!!!

  20. Donna says:

    I am a rare case. Currently on 44th dosage of Tysabri and am somewhat JCV positive (.38, .42, latest was .21). Being on Tysabri gives me such anxiety, makes me gain weight and makes me so tired. I can’t have steroids (gave me PRES syndrome) so an immunologist decided I would take immunosuppressants with the Ocrevus instead. Was very excited until they arrived and I read they can cause PRES! Now I don’t know what to do. I really want off Tysabri desperately. My doctor got angry that I got a second opinion and has told me to go use the other doctor. He threw a temper tantrum like a 5 year old. He said that more and more patients are ending up in the hospital with breathing problems and even the nurses administering the Ocrevus which makes no sense. The other doctor said he has a couple of patients that take it without steroids without problems. Any advice from the experienced?

  21. Frank Takacs says:

    I’m going in tomorrow at 7am for second treatment no side affects after first half dose just became depressed and tired spent a bunch of time in bed I usually get up early and go Hunting at 5am.i don’t know if its my life falling apart around me or if its from the ocrevus. hopefully this will not be a forever thing I was fired at work lost my fiancé and having trouble staying happy in life.

  22. Kelly Fassino says:

    First dose today! No reaction and the Benadryl knocked me out so I slept mostly. Had 4 month wash out from Tysabri waiting on insurance. Very hopeful! I have extreme fatigue and weakness in left leg and heat sensitivity. I just want my energy back!!

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