Ocrelizumab for Multiple Sclerosis User Reviews (Page 4)

• One...
• Taken for 1 to 6 months
• January 29, 2019

Ocrevus (ocrelizumab) "I only had one Ocrevus infusion so far and in my opinion I am it is not going well. Several months later I am still battling extreme fatigue, weight increase, blurry vision, a strange skin rash and more anxiety then when I was on Gilenya. The first therapy I was on was Betaseron and it was the absolute worst. Even MRI more lesions were found on my brain and believe it or not on the nerves leading to my ears. I resolve to stay positive throughout the entire ordeal. This is something I must do daily. One day at a time:)!!!!!!"

• Carlo...
• Taken for 1 to 2 years
• October 20, 2020

Ocrevus (ocrelizumab) "Please read this if you are thinking of stopping your Ocrevus treatment. First half infusion (pre Covid): slight fatigue after it, had to work from home for a few days and sleep A LOT. Second half infusion: horrible side effects: off work for 10 days as a result. Spent my birthday in bed :( I told myself I would never use this drug ever again. Was not possible to switch so did not have any other choice than stick to it. First full dose infusion (about 10 months later due to COVID): I went to the hospital reluctantly, expecting the worst again... BUT to my surprise, I did not need any time off work after the infusion, I have felt more tired for sure, but nothing unbearable. So give it another try if you are hesitant. My MRI shows no new lesions and some have shrunken..."

• Stack
• Taken for 6 months to 1 year
• November 23, 2020

Ocrevus (ocrelizumab) "I received my first full Ocrevus infusion for MS in September. Wow! This brought me from using a cane daily and wheelchair as needed, to not using a cane at all and being able to get a part-time job. I see it as a miracle in my opinion. It’s brought me from the first up to day light."

• Pik
• Taken for 1 to 2 years
• April 2, 2019

Ocrevus (ocrelizumab) "Diagnosed with multiple sclerosis in 2013. Taken Tecfidera, Gilenya,Plegrity,&Ampyra. I'm 55, with PPMS (primary progressive multiple sclerosis) and started Ocrevus 7/2017. The first dose lasted 3 months, second dose 2 months, and the third dose 5 weeks. The fourth dose 2019 has done nothing at all. Lost my job, now walk with cane, balance & pain worse. Six months is to far apart for my condition. I am worse now than when I started it. I'm totally finished with it. Mayzent will be next, a daily pill for SPMS (secondary-progressive MS)."

• Niko
• Taken for 2 to 5 years
• July 5, 2021

Ocrevus (ocrelizumab) "While I was on Ocrevus, my MS symptoms got much worse. I thought my MS shifted to SPMS because I was progressively becoming disabled without any new lesions. I was thinking to buy a wheelchair. I didn't have any more "good days". My brain didn't work. I was depressed. I asked my doctor to switch my med to Mayzent because it was the only medicine for SPMS at that time. After I stopped Ocrevus, I gradually felt better. Unfortunately, Mayzent caused severe side effect and I had to take Ocrevus again. Then I became so sick again. At that time, I was so sure that Ocrevus was making me sick. After stopping this medicine completely, I am back to my baseline. I can hike. My brain works. More good days than bad days. The drug company still doesn't claim worsening symptoms as its side effects from all of these people complaining. Very disgusting."

• MSisBS
• Taken for 2 to 5 years
• March 12, 2022

Ocrevus (ocrelizumab) "I had 4 infusions, 2 years basically. No initial bad symptoms first time. Noticed a huge onset ofsymptoms about 2 months prior to second infusion. Afterwards back to regular symptoms. That lasted for 4 months also. Then all hell broke loose in my GI system. I haven't been normal since. I've lost almost 50 pounds, devastating my powerlifting hobby. I can't hold food in my body, so I'm always exhausted. I don't blame my doctor, and I know its worked amazing for some people, but it is not a miracle. Please stop advertising this dangerous drug as a cure for MS. I take gilenya now but I will never be the same."

• Anonymous
• Taken for 6 months to 1 year
• April 24, 2021

Ocrevus (ocrelizumab) "I was diagnosed on August, 2020, with PPMS at the age of 51. Ocrevus is every 6 months. I had half infusions on 9/16/20 and 9/30/20 respectively and my first full infusion on 3/29. No infusion reactions at anytime. I'm curious to know what all reviewers with negative comments chose to do? Get Ocrevus or not? I have seen no new lesions on MRI but feel my symptoms are much worse and I'm curious what everyone who responded negatively chose to do?"

• MWT
• Taken for less than 1 month
• March 3, 2022

Ocrevus (ocrelizumab) "So my mother took ocrevus she was diagnosed with MS in 2008. MS was a constant battle for her one of her specialists prescribed Ocrevus to her. And when she told me and my wife about the drug she explained what the drug did and basically it gets rid of your immune system and the drug was so potent that you could not let the pill touch your skin, she would have to put on a nitrile glove before removing the pill from its container. Well after she finished the cycle of meds her health declined catastrophically and fast within a year my mother was dead at 52 years old. I strongly urge you all to stay far away from this medication. It is not a miracle drug it a dangerous drug. The medication destroyed her heart and at the end of her life she was in agonizing pain she couldn't breath couldn't walk and had in home hospice care. Unless thats what you want I would tell any doctor that recommends this to get lost."

• Lori
• Taken for 2 to 5 years
• March 20, 2023

Ocrevus (ocrelizumab) "Diagnosed in 2019 PPMS at age 61. Started them right away. 7 doses later I’m going to stop now because of chronic sinus infections following Covid. I felt it was showing me how hard it is to fight infection. Now thinking at my age I would be better off without taking them and the Neurologist agrees. I have tolerated infusions pretty well. It’s time to make a decision because five months of this with no end in sight versus a more severe infection is not ideal! Every day counts for MS patients."

• Reid
• Taken for 1 to 2 years
• February 5, 2019

Ocrevus (ocrelizumab) "Switched to Ocrevus after becoming JC+ on Tysabri after 6 years. While I don't know the efficacy in terms of disease progression, almost all symptoms have increased in intensity since the change. Tysabri was effective in slowing progression; would switch back if I could."

• Miche...
• Taken for 6 months to 1 year
• October 15, 2020

Ocrevus (ocrelizumab) "I had optic neuritis as my first and only real symptom. I got more headaches and some orbital pain periodically after that - there was a little bit of burning sometimes in localized areas in my head that I am not sure how to explain. They said I have tumefactive MS. After taking ocrevus, the headaches and eye orbital pain went away. I think I had a couple muscle twitches but idk if that was anxiety from taking the medication and being worried about getting a infusion reaction. So overall, this was a very good experience and I had no issues taking it, no reaction to the infusion, and my head aches mostly went away :)"

• MadSt...
• Taken for 2 to 5 years
• July 26, 2021

Ocrevus (ocrelizumab) "I started this medication in 2017 and finally quit September 2020. Although my MRIs remained stable I declined physically. I walked into my 1st infusion unaided, now I need full time cane/walker and a scooter. My mobility has been most affected, other symptoms which I could have lived with include hair loss, fatigue worse than usual, cystic eye styes. The worsening of mobility, balance and weakening of muscles has made choosing this drug the worse decision I ever made. If I didn’t do CrossFit everyday, I’m sure I would be bedridden."

• Trump...
• Taken for 1 to 2 years
• August 5, 2018

Ocrevus (ocrelizumab) "I was diagnosed with MS in very early 2002, almost 7 years after my one (and thus far only) MS episode, which for me was Optic Neuritis. Nevertheless, brain MRIs show numerous lesions, and my quality of life has taken a substantial hit, resulting from severe fatigue, sexual dysfunction, an episode of severe depression and anxiety, which took almost a year to get under control and for which I'm still receiving treatment, etc. In a sense, I can say that the three MS therapies that I've been on have been equally effective because I have yet to experience a relapse while on any of them. I switched to Ocrevus based on my conclusion that MS continues to damage your CNS whether or not you are aware of symptomatic changes. And I thought that it was time to switch to a therapy that is believed to be more powerful than many. I have been very pleasantly surprised by the minimal side effects that I've experienced thus far. So, I am able to report that I'm happy with my Ocrevus experience."

• Peter
• Taken for 1 to 2 years
• December 7, 2018

Ocrevus (ocrelizumab) "I have been on ocrevus for 1.5 years. I just had an infusion three days ago. As with all MS meds you are never sure if it is doing anything. I have no new lesions and seem to have areas in my legs that I can feel. My hands have not changed. Still numb and fatigue is the same. Over the 20 years I have taken betaseron, copaxone, gelinya. Betaseron was the worst. Copaxone was good. I really am unsure if there has been an improvement by any. I just get worse and pay a lot of money."

• Junaej
• Taken for 1 to 2 years
• November 2, 2019

Ocrevus (ocrelizumab) "I have secondary progressive multiple sclerosis and I have gotten 4 doses and Ocrevus hasn’t helped my SPMS. I have noticed that every injection I’ve had my hair is getting thinner and my hair falls out quite a bit. I’m going to talk with my neurologist about the problems I’m having and not feeling it’s helping me. My first 1/2 dose I felt great and wasn’t so tired."

• Jdrock
• Taken for 2 to 5 years
• May 26, 2021

Ocrevus (ocrelizumab) "I've been on Ocrevus since June '19. This drug has been a game changer for me. On my last mri, it showed absolutely no new lesions. I have no pain, my gait is much better, and I very rarely get tongue tied. Ocrevus has made me feel "normal". I realize that everyone will react differently, but I honestly couldn't be happier."

• KJano
• Taken for 1 to 2 years
• August 25, 2018

Ocrevus (ocrelizumab) "I’ve been on Ocrevus now for one year. Like all MS drugs, who knows if it is working except by MRI scans and the hope for no new lesions. It is very convenient for me, just a twice per year infusion, I’ve had no side effects, and using it has been a positive experience. No rash like tecfidera, and no pills. I feel fortunate that I tolerate it well."

• Mason...
• Taken for 1 to 2 years
• May 26, 2022

Ocrevus (ocrelizumab) "My daughter was diagnosed with MS when she was 16 years old, about 24 years ago. She tried Avonex, Copaxen, and some of the other medicine out there. In 2018 her neurologist suggested she try Ocrevus. She began having seizures after the first dose which she had never experienced before. Her doctor suspected Ocrevus may have been the cause of the seizures yet continued to schedule her for infusions. She developed excruciating headaches and terrible jaw pain which never resolved. It's interesting because I don't see it advertised on television where we live."

• Kyles
• Taken for 1 to 2 years
• November 12, 2020

Ocrevus (ocrelizumab) "I was diagnosed with MS in 2018 and I have only been on Ocrevus. It has been amazing my neurologist said he wanted to go aggressive with treatment and that was ocrevus. The only reaction I've had was itching and nausea, both passed. Some days I can walk short distances without my cane or walker. I have a MRI in December and am hoping for no new lesions. All the bad reviews on here coaxed me to share my story I did 6 months of PT and I continue the at home exercises but for me ocrevus has been a godsend"

• Myste...
• Taken for 1 to 6 months
• March 27, 2020

Ocrevus (ocrelizumab) "I am on my six month dose of Ocrevus and haven't had any noticeable side effects. I was a little overdue for my dose and some spasticity started to get a little worse, but not too bad. According to my neurologist, I have had no progression on my MRIs since I started Ocrevus and prior to that I had had progression on them every 6 months. So all in all I think that things are going well. I only have to go in twice per year, the cost is less overall (for my insurance) than the other two treatments that I was on (Avonex and Tecfidera), and I don't have to worry about forgetting."

• Amy...
• Taken for 1 to 2 years
• December 29, 2019

Ocrevus (ocrelizumab) "Ocrevus has done nothing to stop the progression of my MS. I talk to several other people who are taking it and nobody has had success past the initial optimism. I have one friend who's wife decided not to take it because her doctor informed her she could stop her heart and he does not believe the reports that it is worth the risk. She said the drug companies have to charge so much to create shareholder value and stockpile money for lawsuits when things go wrong. I am getting ready for a new year, with new insurance and all the authorizations. I am looking for alternatives, because I want to skip it in 2020."

• Kyle...
• August 11, 2020

Ocrevus (ocrelizumab) "I have RRMS. I did 2 infusions of tysabri and got scared from my high JC+ test. Switched to ocrevus and I’ve had NOTHING happen with me. Some mild symptoms for the first couple months. But nothing at all.. this is my first year of being diagnosed and I’ve done my two half doses. I just hope it’s still all good after my first full dose. I’m a little concerned with a study I was looking at about “prolonged use of tysabri might make your switch to ocrevus HARD” (can’t remember the exact statement) but basically I read that taking tysabri for more than 3 months and then switching can make your MS worse... I’m just glad I switched cuz if that’s true , I was not informed by any doctor."

• Joaney...
• Taken for 1 to 2 years
• January 24, 2021

Ocrevus (ocrelizumab) "PPMS. Been on Ocrevus about 2 years. No side effects, and so far no changes on MRI, but MS disability progression is pretty steady. Have gone from walking maybe 1/4 mile with 1 cane to about 1/10 of a mile with 2 canes in this two years. But with MS and DMDs, how do you know? If I weren't on it, maybe I wouldn't be able to walk at all by now. There is no way of knowing. For that reason, I rated it as a 5. One thing I've noticed is some claiming that they have improved on this drug. People, NO MS drug can do that. All any of them can offer is slowing, or best case, stopping disease progression for a while. The only treatments that have shown the ability to reverse MS damage are stem cell therapies, and the jury is out on them AFAIK. Please be realistic with your expectations."

• Anonymous
• Taken for less than 1 month
• February 7, 2019

Ocrevus (ocrelizumab) "Just started my first infusion and I noticed a difference in my energy right away! No side effects for me either. I even went to the gym that night after their infusion. We will see at my next scan if it is working for me as far as lesions."

• Will
• Taken for 2 to 5 years
• December 27, 2020

Ocrevus (ocrelizumab) "Diagnosed with PPMS 4 years ago. Have been undergoing Ocrevus infusions since 2018. There has been no increase of lesions since starting the treatments. There is no trace of cancer in any of my relatives, past or present. In August 2020 I was diagnosed with breast cancer. My oncologist says breast cancer in a male over 70 years old is extremely rare. My dilemma is do I continue the treatments and risk additional cancer developments or stop the treatment and let the MS progress. Once again a no win decision!"