Adverse Effects Influence Patient’s Perspective of Ocrevus’s Effectiveness, Survey Shows

Adverse Effects Influence Patient’s Perspective of Ocrevus’s Effectiveness, Survey Shows

Higher rates of adverse effects have a negative impact on a patient’s perspective about treatment with Ocrevus (ocrelizumab), according to a survey conducted by the multiple sclerosis community GeneFo.

About half of the 840 patient responses surveyed so far have reported improvements from Ocrevus. Those reporting none had a higher rate of adverse effects, a finding highlighting the importance of doctors managing the therapy’s side effects.

The U.S. Food and Drug Administration approved Ocrevus, which was developed by Genentech, on March 28, 2017. It was a landmark decision, because Ocrevus became the first treatment approved for both the relapsing and progressive forms of MS.

Now, a year after the approval, GeneFo asked patients about their experiences with Ocrevus.

“There has been such a buzz in the MS community, and on our platform in particular, about Ocrevus, which is completely natural as patients are discovering in real-time the effects of a new disease-modifying therapy,” Neer Ziskind, GeneFo’s CEO, said in a news release provided to Multiple Sclerosis New Today. “People who began treatment were happy to share from their experience, and potential Ocrevus users were of course eager to learn from their peers and get advice on how to best adapt to this new medication.”

Sixty percent of the patients who have responded to the survey have relapsing-remitting MS and 28 percent primary progressive MS. Eight percent of the rest have secondary progressive MS, and 5 percent progressive-relapsing MS.

Half of the respondents reported no improvements, while the other half felt Ocrevus was effective. Thirty-six percent who reported improvements said they could walk better, 36 percent said they were less fatigued, and 14 percent said they could see better. Many respondents reported better balance, bowel movements, and heat tolerance, and less brain fog and numbness.

Forty-four percent of respondents reported no long-lasting adverse effects. But 21 percent reported more fatigue, 12 percent more pain, 10 percent more itching, and 6 percent more infections after treatment.

In trying to understand the reasons underlying the effective versus non-effective outcomes, those analyzing the survey results found a significant correlation between adverse effects and lack of effectiveness. Among those reporting that Ocrevus was effective, only 27 percent had lasting side effects. The figure was more than double that — 58 percent — among those who found the therapy ineffective.

Although the findings reflect patients’ perception of the therapy’s effectiveness, they highlight the need for doctors to pay close attention to managing any adverse effects associated with Ocrevus. A better perception of the treatment could not only improve a patient’s mood but also their willingness to stick with it, those doing the analysis said.

The report also found a correlation between gender and the perception of Ocrevus’s effectiveness. Seventy percent of men reported it was effective, versus 50 percent of women. Once again, the numbers correlated with the rate of lasting adverse effects. Ten percent of men reported lasting effects, compared with 54 percent of women.

Although this gender difference needs to be further evaluated, it calls attention to an important factor in treatment optimization and care, those doing the analysis said.

GeneFo is looking for more feedback on Ocrevus to enrich the initial results. To participate in the survey and see an infographic highlighting the results so far, please visit https://tinyurl.com/genefoOCREVUS.

21 comments

  1. Keith Layton says:

    I have had two UTI’s resulting in hospitalizations- one, 1 month after the 1st infusion and 1 DURING the 2nd infusion (THAT WAS WEIRD!). My neurologist believes, as I do, that this is a likely result of the Ocrevus. I have had two infusions thus far.
    I do, however, feel that my disease has stabilized (PPMS), so I will continue with the infusions.

    • Deborah Tedesco says:

      I, too, had an UTI after my second infusion but it never occurred to me that it could be from the infusion. I don’t think my disease has stabilized though. I’m progressively getting worse. I cannot walk without 2 canes or walker and only for a very short distance.

  2. Susan Nichols says:

    My problem with the side effects of Ocrevus has not been my doctors’ failure to manage them. It has been the unremitting volume and nature of side effects that has required me to take four antibiotics, an antifungal, two antiviral medications, and greatly increased Baclofen for spasticity since starting Ocrevus. I’ve added a daily antihistamine and had a three-day course of Solumedrol for a flare. This has gone on since October. The antibiotics were for two UTIs and an ear infection I’ve had in addition to two stomach bugs and one cold. I’m worn out with feeling bad despite curtailing my social life and obsessive use of sanitizer. So it’s not my doctors’ or my failure to manage my side effects from Ocrevus. I’ve never had side effects like this from any medicine and am worried about all these other meds I’ve had to take.

    • Carrie says:

      I really appreciate your response. I want to hear from all people’s experience in helping me decide what to do especiallylems and side effects and issues like infections. Feeling pressure, supposed to give my neuro a decision what I want to do. First I think, I’m going to try it, then I think no. First I was going to jump in and try it, then I started wondering because my body tends to be so sensitive and reactions to every med including antibiotics, the flu shot, and two other DMDS, so concerned about reactions and sensitivity to this. Especially since I have no new lesions for two yrs and symptoms currently are mild to tolerable. I know there is the risk of possibly more problems long term for me with the MS, trying to weigh all the risk factors I would and wouldn’t want to deal with in my decision. I feel both ways are a risk but at least I feel when I decide, I’ll have weighed the risks. I hope you get to feeling better soon!

  3. Ardelle says:

    I have had no problem. After the first infusion, I started feeling better after 2 months. I had my second infusion in February and I feel great. Lots more energy. I can now occasionally do 10,000 steps 2 or 3 times a week. So far, so good and no cancer yet.

  4. Kevin Lipetzky says:

    Thank you all for sharing. I am always looking for something that will help me walk better. Presently, I am on abagio. I question taking a chance on a new drug. Also, the hasle of Insurance. I. am just getting tired of being a cripple.

  5. Irina says:

    My responce was very negative after two half doses. I feel like I was set off by severe progression. I am refusing my full dose.I am one of the “21 percent reported more fatigue, 12 percent more pain, 10 percent more itching, and 6 percent more infections after treatment”. I have way more fatigue and now have bone pain which I did not have before. Moving is much harder. I used a cane before and still use it now, but some days I just spend in bed.

  6. Patricia A Jones says:

    I am considering this medicine I am in a wheelchair have not walked in several yrs I have had 2 kinds of chemo tried not everythint I have primary progressive but I am more confused reading comments than I was before very scared any suggestions?

  7. David says:

    I had an infusion Sept 2017. Starting in October I had a cold that turned into bronchitis and lasted for a month. This resulted in a sinus infection for which I rec’d antibiotics. The antibiotics gave me C-Dif for which I rec’d another antibiotic. After that cleared up I had severe tension headaches with vomiting in January, (never had headaches in my life). I ended up in ER and had solu-medrol infusions and they cleared up. In February I lost vision in my right eye and as of now my eyesight hasn’t completely recovered yet. Keep in mind, I have PPMS and had none of these problems since I was diagnosed in 2011. It seems that Ocrevus reduced my immune system causing a lot of what I went thru. I have not experienced any improvement in my MS symptoms. I only had one infusion and will re-evaluate in December.

  8. Cheryl says:

    I started Ocrevus after my monthly infusion of Tysabri began causing regular bronchial infections, including 3 bouts of pneumonia. Tysabri worked wonderfully to manage my remitting relapsing ms until the illnesses started. My experience with only the first dose of Ocrevus was/is awful. I refused the second half because I was worse than ever after the first dose. My fatigue was increased by at least 60%. I was depressed, irritable, and in more pain. The numbness in my right leg and arm increased, and my balance has been 70% or so worse than before the Ocrevus. I’ve experienced shortness of breath, and a general feeling of overall ill health. I don’t go anywhere unless I absolutely have to. Before the Ocrevus I was very active, full of life, and managed the ms symptoms with a positive attitude. I’m one month away from when I would have received the next dose. All I can say is that I’m praying that this drug exists my system fully so I can try to reclaim some of the life I had before.
    If this drug works for you, I’m glad, but for those it doesn’t, it cn be terribly debilitating, physically, emotionally, and relationally.

    • Alicia Wight says:

      I’m feeling the same as you after my 2 initial 1/2 doses (infusisions in May). The fear of never being what I was is constant. Know that your not alone. This experience has been both physically and emotionally horrific. I’m terrified as to the consequences of my taking this drug.

  9. Patricia Vasel says:

    I had my first half dose of ocrevus June 11,2018 and had no side effects at all
    The very next day after my infusion I cleaned my entire apartment,3 bedrooms and stairs. I was feeling extremely sluggish for 6 months and hardly making it up my stairs to get to the bathroom. It took me 5 hrs to vacuum,mop, dust, clean all the nasty bugs out of the windows and do laundry. Being 3 days after taking it I’m still feeling great!! I have a lot of energy,my balance is quickly getting better and my energy level is higher. I’m looking forward to my second half dose on the 25th of this month and can’t wait to see how my first full dose in December will be like. Before this med I was on tysabri for 7 yrs and slowly declining after 2 days. I’ve had 2 relapses in the end days of tysabri one in Feb then soon after in March with 5 days in the hospital not feeling much better after the steroids but now I can say nothing more than starting ocrevus has been a God send medication for me. For those who haven’t had a good experience,I pray the best for you that the right meds will come your way. I’ve had MS since 1997 and it’s in no way at all fun but an everyday challenge. I started off at the age of 21 crawling only to now be 43 and walking with no assistance as of yet being the best I can be. May God bless you all as I pray for all everyday that I do and don’t know that all will be well and a cure will soon come.

  10. Jane Sprague says:

    Is anyone alarmed by the clinical history of this drug? They suspended the clinical trial for RA because too many human research subjects died. Then they tried it on lupus patients, again–deaths and bad kidney problems developed. So the drug co. (Genentech?) nixed it for lupus and it is now aimed at us. I have read in some of the data that researchers felt MS Patients would better tolerate the side effects of this drug. It seems like a dangerous agent. Are that many MS people really gaining more mobility, fewer remissions, etc.? and how does that square against some of what people have written here? As MS patients we are super vulnerable to getting excited about new and potentially promising agents of healing; I’m not at all convinced ocrelizumab is worth the risk, especially given the drug company’s history marketing it to divergent groups of sick people.

  11. Chris says:

    Supposed to be getting the second half of my first infusion tomorrow and I’m unsure about it. The first half of my infusion went fine… I felt alright that day, but I don’t deal well at all with steroids mentally, so that hit me for a week. I’ve also had more issues with my bladder, bowels, balance, and brain (cognitive and emotionally) since the infusion. My legs have started to feel weaker as well as having more tension in my back and neck. I most definitely do NOT feel better or even as well as I did prior to my first half dose. I do know that some people end up feeling a bit better a few months into treatment so I suppose I’ll give it a shot, but if this has been any indicator as to what my new “normal” will be, I’m not a fan.

  12. Veronica says:

    Have you tried taking Ampyra for walking? I stared it in June and I felt wierd taking it but I kept at it because it takes several weeks to start working. After two weeks, I stopped using my walker and cain. People cannot even tell I have MS now. I still have all my symptoms, but only I know it. I can live my life! I started taking Ocrevus not to suddenly feel better, but to stop the disease from progressing. If Ocrevus can stop developing more lesions and brain damage, then I am all for it. Ampyra is my majic walking pills, and I get them for free thanks to their copay assistance program. Please talk to your doctor.

  13. Patty Seder says:

    I have had two rounds of Ocrevus. Like many others, I anxiously awaited the FDA approval. I was diagnosed 25 years ago & have run the gambit of all the available drugs. Ocrevus totally kicked me to the curb. I got so sick after each infusion that I finally decided it was not worth the misery. The nurses at my infusion site have shared that they have numerous patients who are not tolerating it well. I have been “drying out” from the Ocrevus & will restart Tysabri again soon. It’s all about quality of life & Ovrevus was toxic to my body.

  14. Marie Lippman says:

    I began Ocrevus last October. Then in January I got bronchitis and it lasted a month. Then in July, I got an UTI that lasted over a month and 3 different antibiotics. And very fatigued. This stuff never happened, ever in my life! I battling Ppms and Ocrevus is only making me feel worse, so I’m so done with it!!!!

  15. Tania Mullan says:

    I am relatively new to managing MS(3yrs) . My specialist say I’m “low level” but due to a lesion in my brain stem and me needing to be functional as a single Mum with limited family support, he started me on Ocrevus in May. I tolerated the infusion fine. Felt ‘unwell’ for a couple of days’ but otherwise ok. Then I went from feeling like a sodden sponge dragging myself around the house, to having a spring in my step like I remember from years ago. I no longer needed daytime naps. I was managing my house/work with optimism and renewed hope of a ‘full’ life in future. Over last month I have started deteriorating. I have had emotional lows, my fatigue has returned, and aching arms are a constant. My memory/concentration is also crap. I’m about to have a review MRI/bloods done with my upcoming second round being brought fwd by a month as I am supposed to be travelling overseas. I am both hopeful I will have the same ‘energising’ response as last time, but worried after reading these adverse experiences as I would hate to have issues whilst in USA (within a week of having the infusion). I also had anxiety/drepression before diagnosis – and a secondary autoimmune Vogts Koyangi Haradas syndrome so it can be difficult to ascertain what is causing symptoms :/

  16. O says:

    Since on the drug, I started to develop acute bronchitis during the winter months. I am on ocrevus(ocrelizumab) since 2009. The situation is getting so much worse with these bronchitises, that for the very first time I am considering stopping taking Ocrevus any longer. I am in the middle of my third bronchitis this year!

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