User Reviews for Ocrelizumab to treat Multiple Sclerosis
Also known as: Ocrevus
Ocrelizumab has an average rating of 4.8 out of 10 from a total of 123 ratings for the treatment of Multiple Sclerosis. 35% of reviewers reported a positive effect, while 49% reported a negative effect.
Ocrevus (ocrelizumab): “When Ocrevus first came out it was practically touted as a ‘miracle drug’ and it seemed like everyone with MS wanted to get on it. I had such high hopes when I read that not only did it do a great job in reducing relapses and new brain lesions, it significantly slowed progression and even dramatically improved a lot of patients’ symptoms. Well, in the almost two years I’ve been on it all it has done for me is make my walking a heck of a lot worse. Prior to Ocrevus I used to enjoy going on hiking trails even though I use a cane. Now I can barely hobble around my backyard. Rather than slow down progression, it seems to have sped mine up. I fear that if I continue to stay on it, the day will come when I won’t be able to walk at all anymore. Really disappointed and disgusted by this drug.”
Ocrevus (ocrelizumab): “It's been 20 hours since my first infusion. My ears and hair follicles itched and benadryl knocked this out. I also had a slight amount difficulty swallowing. My calves started having severe spasticity and pains but after 30 minutes this was gone. Had some throat scratchiness, like that of start to get a cold, but this was gone in 2 hours. I was diagnosed in 2003 with RRMS. I was in high school. Lost feeling in all finger tips and toes. I experience optic neuritis daily (have lost some sight in right eye). Balance, gait, thinking, depression, FATIGUE. I am 36. I have PPMS now. Been on Copaxone, Avonex, Plegridy. I quit working in March 2020. Then Covid and I went into isolation. I take primatene meant for intermittent asthma but it's ephedrine. It really helps with FATIGUE. Give it time. Remember MS is a beast and not every drug will help everyone. My best advice for MS: comedy, sleep, and acceptance. It stinks but remember. You choose how you can react.”
Ocrevus (ocrelizumab): “I have had two half doses of Ocrevus and my fatigue is almost totally gone. I felt a difference right away. Seems like it improved the very first day. I have RRMS. All my functioning seems to have improved. I was on Tecfidera for 3.5 yrs and it went well, but had to stop. Tried Aubagio, reacted, had to stop. When Aubagio was all gone, tried Ocrevus. Relief! Without Ocrevus, my left leg was starting to drag, fatigue was strong, walking was harder, trouble with cognition and memory. The first day after infusion with Ocrevus, I felt a difference, almost like I don't have MS. Reading all these reviews, I wonder if there are types of MS that respond better than others. It is interesting to see some people have no help with Ocrevus and others feel better. I am glad I am one that is better. All to best to anyone fighting MS, it's no picnic. Wish everybody well.”
Ocrevus (ocrelizumab): “I need to write this review because i am so surprise how many bad reviews there are for this drug. This drug has changed my life! I started treatment by taking Rituximab for 1 year. After the year, they switched me to Ocrevus. I haven't had any attacks in 2 years. I was diagnosed with RRMS when I was just 17 years old. For 6 years after, I was having 2-3 extreme attacks per year. Since this treatment, I have so much energy and can do so many things I couldn't before. This drug has been the biggest blessing.”
Ocrevus (ocrelizumab): “For me having MS for 20 years . Going downhill quickly in last three years and already been on three treatments. Rebif , copaxone, and gilenya. Hope was lost until now. This drug is a game changer for me. Mobility has improved so much that I am forgetting about my ms. Enjoying life with my family and for the first time in years I have hope.”
Ocrevus (ocrelizumab): “People need to stop being so negative on here it isn't helpful to anyone, we all have MS it is never going to be easy and moaning all the time look for positives in your life. I have had MS for 10 years 7 yrs on Tysabri now switched to Ocrevus had first 2 doses not doing great but is early days it is the long term effects of this treatment that you will notice is 5 yrs + to notice any great benefit hang in there all of you it will improve. Be patient.”
Ocrevus (ocrelizumab): “Ocrevus almost finished off my sister. After a second infusion , she was hospitalized in a near catatonic state and suffering from severe neurological effects. She had hallucinations, a heart attack, and nearly died. FDA should never have approved this drug without more testing. Strongly advise against taking Ocrevus. The effects of MS are less severe than the effects of Ocrevus. Do not allow a physician to upsell you on this lethal treatment.”
Frequently asked questions
- What are the new drugs used for multiple sclerosis (MS)?
- How much does an Ocrevus infusion cost?
- How long does it take Ocrevus to work?
- Is Ocrevus a form of chemotherapy?
Ocrevus (ocrelizumab): “I was diagnosed rrms about a decade ago and I'm currently in my early 30s. I finished the second of my first 2 infusions a few weeks back. So I can't really attest to how effective the drug will be long term. What I can attest to, is that before I started it I was really concerned. It's all too easy to read online and get worried about potentially severe side effects and infusion reactions. I figure most people don't report when nothing goes wrong. So that's what I want to do. I started my first infusion, got my premedication for which I had no side effects. The only infusion side effect I had was a slightly odd sensation in the back of my throat near the end of the infusion which quickly went away after finishing. In my second infusion I had no side effects whatsoever. And from then until now I honestly wouldn't even have known I had it. I'm optimistic and very glad I didn't let my fears get the better of me. Your experience may vary of course.”
Ocrevus (ocrelizumab): “I've been on Ocrevus for exactly one year. Going for my fourth injection next week. This drug has been a game changer for me. I had my MRI last month and NO NEW LESIONS and we are seeing that old lesions are no longer showing up at all on MRI with and without contrast. Nothing is active. This drug is a breeze compared to 14 years of Avonex then a bad reaction to copaxone (I'm allergic) and a horrible experience with Tecfidera. I have had zero side effects from taking this medication after the infusion. During infusion my throat got a little scratchy that was it and that disappeared as fast as it started and only happened on my very first half dose last year. This is not a cure. This drug acts just like all the other MS treatments...to try and slow disease progression. I find it awful that people are bashing this medication after just one or two doses. This drug has been a game changer for me.”
Ocrevus (ocrelizumab): “Weird: I was RRMS (relapsing-remitting multiple sclerosis) and my neuro was so giddy about this drug that she even used the big C word (cure) with it. I did 4 infusions and what did I get for my loyalty and trust of my neuro: I am now Secondary-progressive multiple sclerosis (SPMS). I declined so fast and drastically after taking this poison that I was re diagnosed and I said "What the .. you promised me this would basically cure me". Tough luck they said. I also learned that the "neuro" in question received 260K in "appearance" fees from Biogen. Just google openpaymentsdata and see how much your doctor is getting paid ! AWESOME!!! He makes money. I suffer. Go in fully woke on this one folks.”
Ocrevus (ocrelizumab): “Unfortunately, Ocrevus made all of my MS symptoms worse and even gave me some new symptoms. I was on Ocrevus for 3 infusions (1.5 years) After one year of being off of Ocrevus, I am back to my baseline. This drug gave me incredibly bad pain - muscles and joints, including Trigeminal Neuralgia (never had it before O and it's gone now). I felt nauseous on this drug, had horrible migraines, and the weakness in my legs increased. It also gave me cystic acne. I am much better now that my WBC is back up, but it took a whole year for my labs to normalize and to feel better. I thought it was an awful drug, but everyone is different! I had no new lesions, but I did progress and feel worse than before I started taking it. I will say that the neuro didn't report my adverse effects even though I was on a clinical study- so I am wondering if they only report lesion activity.”
Ocrevus (ocrelizumab): “Diagnosed RRMS in 2011. been on rebif, tecfidera. Started my first two halves of Ocrevus in May 2019 I had less fatigue. I did notice I became more clumsy. Told my dr. He said to keep taking, it will get better. First full dose 10/19 the clumsiness got even worse I can't lift my feet. I went from lightly walking with a cane before Ocrevus, to me being on a rollator. It does work for a lot of people but people need to realize that a small percentage of us is making us more disabled. I called the company and ask them about their trial. They said there is a small few that have problems with walking. It took me forever to find this page to figure out that I was not going crazy, something was really wrong. I have a new neurologist now that wants to say that I have progressed to spms but Im telling him to hold on, does this drug make you progress or do you have to wait for this to wear off. Anyone when you stop taking it do you ever get better with walking and how long does it take.”
Ocrevus (ocrelizumab): “I was diagnosed with PPMS in January 2018 and my neurologist put me on OCREVUS. At the time of diagnosis to MS I just had a little numbness in left hand and a little weakness in right leg but now after two years and three times OCREVUS Infusion which was supposed to help me and slow down the disease progression but on the contrary I am using walker for little walking at home with lack of balance and too much spasticity, weakness, numbness, bladder issue, low back and neck pains!!! I think this drug has destroyed my life and I think if I hadn't used this drug my MS disease had not progressed at this level but I had no other choice because my neurologist said this is the only medication for PPMS!!! Please be careful to use this terrible drug.”
Ocrevus (ocrelizumab): “This was my second try for Ocrevus because the Dr. wanted me on a treatment for MS. Guess what I quickly know & remember now why I didn't want to be on this or continue with Ocrevus!!! Since my infusion 6/29/20 I have felt terrible severe fatigue/on & off depression severe muscle aches at back of both upper legs... trouble walking feet sticking to floor causing falls/ slides on carpet..headaches...some congative issues on & off sooo tired even after some sleep at nighttime. MS stinks but when taking something that's supposed to help causing worse issues than began with really is more thank stinks it SUCKS!!! I DEFINITELY WILL NO GO ON THIS EVER AGAIN...JUST HOPING THIS GETS OUT OF MY SYSTEM SOOON!!!”
Ocrevus (ocrelizumab): “Ocrevus is a monster!! I have RRMS that is very aggressive. 3 treatments later I have absolutely NO quality of life. Side effects from this poison were not in the "brochure" I received from my neurologist. Only the ones regarding initial ones at time of infusion. More common side effects, I have 18 out of 24, Less Common 2 out of 3, More Common 9 out of 11. I started out using a forearm crutch now a wheelchair, my cognitive skills have plummeted. I have no interest in anything, my passion was my art. Painting, designing I feel flat, void of emotion. The ironic part, I have no new lesions. I have said no to taking it, I will be taking Copaxone. I hope and pray the side effects will go away. I don't understand how a medication that does this is even on the market. 4.5 out of 10 is not good odds. I haven't found any group or site that has good reviews that out weigh the bad. MS IS BAD ENOUGH, now mine is WORSE!!”
Ocrevus (ocrelizumab): “Ocrevus has hastened my demise: one new lesion, intense tingling in my neck and no strength. All of these deficiencies occurred in one year -- the same year I was on Ocrevus. What is going on? How did this happen? The drug was supposed to help me, not hurt me. I do not believe any of the data from the testing. I am angry.”
Ocrevus (ocrelizumab): “My husband is 29 and was diagnosed with Primary-progressive multiple sclerosis (PPMS) in 2017 and has been having the Ocrevus every 6 months since. His MRIs have shown no progression - stable - and although he has not improved a huge amount every little bit of progress is amazing !! He can go on longer walks , his vertigo is slightly improving and overall he seems to be doing better than he was before the ocrevus. He only had one side effect during the infusion which was red itchy ears and an itch in his throat but with some benedryl he was good to go. We are thankful for ocrevus.”
- How long does an Ocrevus infusion take?
- How does Ocrevus work for MS?
- Ocrevus vs Aubagio: How do they compare for MS?
Ocrevus (ocrelizumab): “I went on this DMD after my neurologist suggested I read the "glowing reviews" on You tube and this place on reddit called /r/Multiple Sclerosis . I did all the infusions and a year later I went from mild RRMS to a very aggressive RRMS. What happened? Why did this happen? The smug Doctor said "it can happen to a small percentage of people". What? You tell me after I take this horrible treatment? I should have been informed before. Is it true that neurologist are paid "appearance fees" by this manufacturer to push this drug? I also learned that the /r/Multiple Sclerosis some of the comment sites (but not this one) people are paid to push this drug so be careful what you read. Talk to people you meet at the clinics for advice.”
Ocrevus (ocrelizumab): “AFTER just having ONE Ocrevus infusion, MY experience is as follows: I will NOT take this drug EVER again!!! WHY???? The two big toes on my feet are black and falling off, the joints on my hands, ankles, fingers and knees hurt, I have extreme fatigue, the knuckles on both hands are black, and I can no loner bend my legs!!!!!!”
Ocrevus (ocrelizumab): “I was diagnosed with MS at the age of 56 ,in Jan of this year. I was approved to try the new drug OCREVUS and I have to say this new drug is a 100% game changer for anyone with MS. It has been a complete turnaround with my balance, mobility, this is the best that I've felt in years. Thank You, OCREVUS. Tyrome”
Ocrevus (ocrelizumab): “Diagnosed in 2015 after major flare up of multiple sclerosis (MS) with multiple active lesions on brain, neck, and spine. Tried Avonex, Tecfidera, and Copaxone but still continued progressing with new lesions. Started Ocrevus in November 2017 and have had no new MS disease activity since, it is working! I've had 2 half infusions and 3 full infusions since starting. Less fatigue, less muscle spasms, less cognitive problems, better balance, overall I've just felt great since starting.”
Ocrevus (ocrelizumab): “I was diagnosed with MS in 2015. Had large attack. Was prescribed Copaxone. I liked it in the beginning but after awhile was skipping certain parts of my body because of reaction. When started Ocrevus I felt like a miracle has happened. Feel as good as I can feel. Started driving including on a freeway. Don't feel fatigue like I used to. And no shots. Just twice a year. Love it. The only BIG downside: over $100,000 per dose? Really? I think its way overpriced. Its a great medicine, but somebody is making billions of $ on it.”
Ocrevus (ocrelizumab): “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 fall of 2018. I started out on gilenya but it seemed to fatigue me worse and I had more lesions since 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.”
Ocrevus (ocrelizumab): “I've had MS for 29 years. No relapses for a while, no worsening MRIs for a long time. So it would seem I'm in secondary progressive stage. I was on Tecfedera since the week it was approved by the FDA, about 10 years ago. But I've been declining slowly with the usual MS stuff - fatigue, cognitive, walking is slow, right side is weak, and falling. So I decided I wanted to get more aggressive with my treatment than my neurologist was willing to, so I switched to another neurologist knowing he would put me on Ocrevus. I had 2 first time infusions about 5 weeks ago. Well now I'm scared. Since then I had complete numbness on right side for about 24 hours but it did go away. Bladder has never been as bad as it is now. I feel like I have numbness traveling from foot to foot, hands, back, stomach. I'm pretty nervous. Thinking I might have made a mistake,”
Ocrevus (ocrelizumab): “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.”
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare professionals.
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