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Ocrevus for Multiple Sclerosis User Reviews (Page 2)

Reviews for Ocrevus

Commonly mentioned side effects
  • Pik...
  • Taken for 1 to 2 years
  • April 3, 2019

"55, male, progressive multiple sclerosis since 2013. I've had Tecfidera, Gilenya, Plegridy, and started Ocrevus 7/17. The first dose lasted 3 months, second dose 2 months, third dose 5 weeks. I'm worse now than ever. I've lost my job, I walk with a cane, balance is worse, pain is worse. 2/2019 was the fourth and last dose. It did nothing at all. 'GARBAGE'. At this moment, I can barely walk, take a small step then stop. I'm so disgusted from all the hype about Ocrevus. It's good for RRMS people, not progressive. 6 months between doses is too far apart. Mayzent just got approved, that's a daily DMT. Ocrevus ruined my life."

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  • sli...
  • September 21, 2019

"I started Ocrevus in July of 2018. I have had three treatments, and I am now worse than I have ever been with MS! My balance is completely shot, I have pain I never had before, tightness and paralysis in my left leg, stumbling much more, can hardly pick up my feet, chest pain issues, headaches, and cloudy thinking problems! This drug was pushed on me by my neurologist despite me not wanting it because he said it was the best thing out. Now I know it was the best thing for his pocket and not my health! DONE with Ocrevus!"

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  • Ida...
  • Taken for 6 months to 1 year
  • June 21, 2020

"I went from 2 years taking Tecfidera to starting Tysabri for 5 months, then now 8 months in, now on Ocrevus. Just had a brain MRI and no change. I am worse off since starting Ocrevus as far as balance and now have to use my scooter 100% to get around, worse fatigue, balance, swelling in legs, and use of arm/hand along with bladder issues. I am embarrassed to say I have wet my bed twice since taking Ocrevus and never before with other DMTs. This DMT might work for some, but it’s just not for me. I am bummed as I have to wait till it’s out of my system to try a different DMT and don’t know which one or if I want any."

2 / 10
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Frequently asked questions

  • Sum...
  • Taken for 1 to 2 years
  • July 25, 2020

"I had just turned 28, woke up one morning with my left hand numb. Over a few weeks it spread to my entire body and led me to get diagnosed in the fall of 2018. I started out on Gilenya, but it seemed to fatigue me worse, and I had more lesions since the last scan. I switched to Ocrevus, and it has been amazing. Since then, I have had no side effects, a reduction in lesions, no enhancements, and no new lesions. Nothing cures MS, so of course, fatigue and whatnot still happens, but I am a healthy and happy 30-year-old living the good life thanks to Ocrevus."

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  • jus...
  • Taken for 1 to 2 years
  • May 12, 2020

"For my husband, it was a gift from God. April 2018, within two weeks, he went from a normal life to great difficulty walking, to being diagnosed. He was on Tysabri from June-October of 2018. He got weaker after each treatment, not knowing if it was the progression of the disease, the flare-up, or the medication. He was using a four-wheeled walker and falling. The day after his first half dose in January 2019, he was a bit stronger, and by spring, he was only using a cane. He no longer uses a cane and is now able to drive a car, walk a distance, and take a shower without weakness. These results are not typical. There is not a lot of typical in MS, so don't be discouraged after trying one or more medications. I would suggest two things: have a neurologist for MS and to use a physical therapist who is certified in MS therapy soon after they are diagnosed. There are very specific exercises, it is not just about strengthening. There has been a decrease in a lesion after a year."

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  • Anonymous
  • Taken for 6 months to 1 year
  • September 29, 2020

"I have had the second Ocrevus infusion, will NOT be getting another. Ocrevus gave me depression, anxiety, worsening/weakening of my arms (that were fine before taking this poison), feet blowing up (never had this problem before), etc. - I thought these things were part of my body adjusting to this drug. All started about one month after the first infusion, and went away three weeks before the second infusion. So I thought the drug was starting to work. Now a couple of weeks after the second infusion, all the side effects are returning. Hopefully this damage isn't permanent."

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  • Que...
  • Taken for 1 to 2 years
  • September 20, 2019

"I had my 4th infusion 1 week ago, and I feel worse than I ever have. My legs feel like they're 2x4s anchored in concrete. I am in such a deep depression that I cry over everything (I've been on 2 antidepressants for years), and on top of that, I am so exhausted, more so than normal, that I just want to stay in bed and sleep. (I still work full-time in a desk job.) Every single struggle I have had since I became Secondary Progressive is enhanced by at least 4 times worse. I am going to talk to my Neurologist tomorrow, as I will be changing my course of treatment."

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More FAQ

  • Ala...
  • Taken for 1 to 6 months
  • June 24, 2023

"I was on Gilenya for 7 years. Because of my insurance, I had to switch to Ocrevus. I was excited because it has better results based on the studies. Two days after my first infusion, I got strong fatigue and a feeling of pressure in my brain. It stopped after 10 days. I decided to do the second infusion 15 days after. Exactly the same experience. I got the exact symptoms two days after the second infusion. It lasted 8 days. - pressure in my brain - hard to think, focus - feeling of falling when I close my eyes. Two weeks after, for no reason, I got the same experience again for 15 days."

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  • sin...
  • Taken for 6 months to 1 year
  • October 3, 2019

"I am 63-year-old female, have MS for 31 years. Tried all the drugs. Was on Copaxone in the 90s until Shared Solutions called me and told me to pay $750.00 a month. Went off of it, tried Ampyra, and in 2 months my back was so painful, had to go off. Next Tecfidera, had to go off because I have the JC virus. Tried Plegridy, took my white blood cells down. So the neurologist talked me into trying Ocrevus. Took 2 half infusions, then 6 months later the full-blown one in January of this year. 3 weeks later, I got shingles and a week later sinus and upper and lower respiratory tract infections. I was so sick I just wanted to die. Wished I had never taken it. I walk with crutches, and now I am about totally in a wheelchair. The doctor removed my license. Wished I would have never taken Ocrevus. I think the longer you have MS, it will do more harm. But these neurologists are pushing the drug on everybody. I went back to Copaxone."

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  • Ksa...
  • Taken for 1 to 2 years
  • February 28, 2020

"I am 58 and have had MS for over 35 years, I am now SPMS. I have been on Copaxone and Betaseron. I started Ocrevus in December 2018. I was excited because it was only twice a year. It has worked well for me, has lessened my fatigue, and there has been no progression (which is a good thing). I am so sorry for all those people who have not had any success with it."

9 / 10
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  • Ron...
  • Taken for 2 to 5 years
  • April 26, 2020

"I have started my second year on Ocrevus and have gotten worse by the day. I wish I had never taken this drug, but my neurologist said I should, so I did, and there has been no improvement with anything, just worsening of symptoms! I’m 46, and balance, fatigue, and weakness, among other things, have become so much worse! It did not help my PPMS, it has just made things far worse for me."

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  • Old...
  • Taken for less than 1 month
  • July 11, 2021

"Had just taken the 2nd initial dose. About a week later, all heck broke loose with my body. I cannot say it was the Ocrevus, but it was the only new thing. Last time I had a seizure was 2016. About a week after the 2nd initial dose, I experienced a raging UTI and started having seizures. Long story short, I was in the hospital for a week, rehab 5 days when they called my wife to say I was unresponsive, then back to the hospital for 1 more week. During this 3-week period, I experienced, that I knew of, 4 more seizures. Ocrevus is not for me."

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  • lim...
  • Taken for 1 to 2 years
  • February 18, 2021

"I started taking Ocrevus in 2019. I was able to walk into the infusion center for my first half dose. In less than two years, I have gone from using a cane to a walker, and now I am totally wheelchair-bound. I will not take another infusion and have decided to stay off of any medication for now."

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  • GGG...
  • Taken for 1 to 2 years
  • June 12, 2022

"Wish I had found this site before taking the infusions. Started feeling some worsening of the side effect symptoms during the 2nd infusion, so I googled patient reviews that confirmed to me it wasn’t my imagination, as the neurologists say and refuse to listen! The worsening of my symptoms and some new ones includes reduced mobility and increased fatigue and sensations, but what jumped out at me was the review on here about TMJ! That reminded me I had experienced incredibly painful TMJ after the first infusion, but had never related it to the infusion, as neurologists unanimously say it wasn’t! I had forgotten about it until it returned immediately after infusion 2, even worse, so despite not being keen on medicating, I’ve had to resort to taking anti-epileptic Tegretol in addition to Pregabalin to try to manage excruciating pain. I’m never taking Ocrevus again, but will the new/worse effects ever go away?"

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  • Ano...
  • Taken for 6 months to 1 year
  • September 22, 2022

"Only made it to the second full dose of Ocrevus, and the pneumonia bouts began. I was hospitalized constantly. Ten bouts of pneumonia later, sepsis in addition, twice. This drug nearly killed me and has weakened my immune system so much that I can't take anything for my MS. Developed pulmonary hypertension by the seventh bout of pneumonia. Stay away from this drug. Other than MS, I was in good health. Spent my 40th birthday in the hospital. Now every time I get a fever, I freak out. I have a 40% chance I won't make it within five years now. Respiratory infections are a side effect, it's in the insert for it. The ER doctor tried to argue with me about it, understandably so, as it isn't listed under side effects if you simply Google it. I found it buried in the insert under the study findings. Physicians need to be made aware of this. Guaranteed quite a few people have died from this, and the cause of death is listed as COVID. Beware."

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  • Val...
  • Taken for 1 to 6 months
  • June 17, 2019

"I have only had my first two halves of Ocrevus so far. The first round was in January and the second in February. I like only having to do it twice a year, but I really have not felt very well since starting it. I have had constant sinus issues and throat pain since I started it. I keep being put on steroids and antibiotics. Just days after finishing them, it comes back. I have been noticing more stomach issues also."

3 / 10
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  • Eri...
  • October 30, 2022

"My first dose, I felt horrible, and my MS progressed. I had to stop driving. Second dose, same feelings, MS progressed to not being able to walk well, even with a walker. Doctor asked me to take another dose, so I did. I have been stuck in bed ever since. I have to use a wheelchair and a lift to be able to do anything. Please make sure if you are a natural redhead to really think about using this medication."

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  • JRa...
  • Taken for 2 to 5 years
  • December 22, 2019

"Going on 6 doses and getting worse. Like a former reviewer stated, 'chemo did more.' Ocrevus is extremely overpriced since it is the only product approved for PPMS. It would be better to be on a placebo for a tenth of the price, but praying on people's desperation is what drug companies do. It seems someone has Facebook bots writing positive reviews for Ocrevus because the social media hype does not match real-world experience - like on here."

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  • Sil...
  • Taken for less than 1 month
  • May 14, 2020

"Due to the COVID-19, there was a delay in taking my second Ocrevus infusion. I had the second attack on April 24, 2020, I suffered from vertigo, stiffness, and heavy leg. I had the second infusion on April 28, 2020. It went perfectly well. Also, I did a second MRI for the brain, it shows there is an interval decrease in the size of the largest lesion at the right frontal deep white matter, now measuring 1.3 x 1 cm (before it was: 2.2 x 1.6 cm) and no enhancement or fluid diffusion restriction. This drug works perfectly for me, and I hope it works for you!"

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  • She...
  • Taken for 6 months to 1 year
  • March 31, 2019

"I went on Ocrevus after the advice and 'rave reviews' I read on r/reddit about Multiple Sclerosis. After the infusion, I felt terrible, but that was expected. I also thought I would expect a continual rebound and eventually get better, but nope, it made no difference. I later learned that this could be fake? Ocrevus may work for some, but not all. For me, it made me worse, not better, and be careful what you read online. It's better to talk to someone you know in real life who has had this treatment."

2 / 10
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  • KBa...
  • Taken for less than 1 month
  • April 23, 2020

"I was having trouble walking—poor balance, stiffness, slowness, and super heavy feeling legs. I went in for my first Ocrevus treatment yesterday—half dose and second one in two weeks. Had a rough night sleeping...abdominal pain, headaches, and nausea. Woke up this morning and feel great! I don’t know if it’s a placebo effect or not, but I feel like a different person. I am walking without stiffness, lumbering, or heaviness in my legs. It could be the pretreatment of steroids I suppose, but my initial response is cautiously optimistic."

9 / 10
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  • Yor...
  • Taken for 1 to 2 years
  • January 22, 2020

"I have been on Ocrevus for a total of four infusions! Tysabri prior kept me going until JVC test. My health has declined drastically. Diagnosed at 37, now 60. My vision is blurred. Dizziness is overwhelming. Balance shot. But, my cognition has plummeted! More weakness and pain also. Feeling weaker. Constant infections, shortness of breath. Anxiety! Went from fairly clear-minded to isolating idiot!"

3 / 10
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  • she...
  • Taken for 6 months to 1 year
  • October 21, 2018

"It did not work for me at all. I started the treatment in my 15th year of MS, and I got quite a bit worse. After being on it for one year, I told my doctor no more! Now I have trouble walking, and fatigue is way worse. Another of the side effects that affects me is rapid heartbeat and faster breathing that still hasn't gone away, and my last infusion was 7 months ago. I'm older, 57, and there are numerous cases where older people like me do not respond well to Ocrevus. So if you're in my age range, proceed with caution, but I would not recommend it!"

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  • Way...
  • March 24, 2019

"I am 68 years old with relapsing-remitting MS (multiple sclerosis) for 23 years. Have taken Betaseron and Copaxone. Take Ampyra. No problems with the injection site but discontinued both Betaseron and Copaxone due to muscle cramps. MRI is stable, but my neuro suggested Ocrevus. Only had one infusion. Didn’t return for the second half of the first round. My neuro and I agree to discontinue Ocrevus for me for good. Side effects of Ocrevus were immediate and severe. Six weeks in and I am still recovering from the infusion. Immediately after the infusion, which I slept through, I awoke unable to recognize my surroundings. I did recognize family, but I felt I was in a nightmare. Cognition was altered and diminished. I was also very weak, especially my legs-extremely frightening. Severe confusion resolved mostly in 24 hours, slowly. The weakness has lingered, requiring pulse steroids with partial resolution. Slowly improving with rest, exercise, and prayer. The infusion was worse than any flare in my 20+ years of MS. Currently hesitant to start another DMD."

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  • iru...
  • Taken for 1 to 6 months
  • September 23, 2019

"My experience with Ocrevus is just bad. I have PPMS and had the 3rd infusion in August. Conditions are getting worse with vision and walking. Doctor said the third infusion can improve my condition, but it is vice versa."

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