Ocrelizumab and Dizziness: What Users Say

• Nin...
• June 28, 2020

Ocrelizumab for Multiple Sclerosis "Ocrevus is a monster!! I have RRMS that is very aggressive. Three 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 the 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 is that I have no new lesions. I have decided not to take 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. Four point five out of 10 is not good odds. I haven't found any group or site that has good reviews that outweigh the bad. MS IS BAD ENOUGH, now mine is WORSE!"

• sli...
• September 21, 2019

Ocrelizumab for Multiple Sclerosis "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!"

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

Ocrelizumab for Multiple Sclerosis "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."

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

Ocrelizumab for Multiple Sclerosis "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!"

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

Ocrelizumab for Multiple Sclerosis "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!"

• MSe...
• Taken for 1 to 2 years
• April 9, 2021

Ocrelizumab for Multiple Sclerosis "Ocrevus did not work well for me at all. After the third full infusion, I spent months in bed, vitals all over the place, pulse between 37 to 127, laying flat and with activity. SATing 70-80's with activity. Fatigue, weakness, dizzy, lightheaded, fainting, brain fog, and MS hug that felt like my ribs were cracking. Paralysis a week after infusion. In all fairness, it was a different type of drug for me. I do better with MS meds like Copaxone, Gilenya, and Tecfidera."

• Eri...
• Taken for 1 to 2 years
• January 12, 2022

Ocrelizumab for Multiple Sclerosis "I have been on Ocrevus nearly 2 years. Just had brain MRI. Shows new and larger lesions. It never helped with any of my MS symptoms (fatigue, pain, horrible insomnia, twitching, poor balance, anxiety, trouble with concentration, bad memory). If anything, these symptoms have gotten worse. And now it shows my MS has only progressed since taking Ocrevus. Extremely disappointed with this treatment."

• Ann...
• Taken for 2 to 5 years
• November 20, 2019

Ocrelizumab for Multiple Sclerosis "My sister has been on this a few years, and it hasn’t helped. She is worse than when she started and will soon need a wheelchair. I think I will discuss with her doctor at the next appointment. She has been on Copaxone and then Gilenya but was taken off both for various reasons. She is always very dizzy, and her cognition has gone from bad to worse."

• Kim...
• Taken for 1 to 2 years
• June 11, 2022

Ocrelizumab for Multiple Sclerosis "Started March 2020. Did great on Tysabri with severe weight gain, hair loss, gum pain, dental issues, edema, thyroid nodules growing like crazy, extreme fatigue, had to take medical leave from work, can’t sleep, rashes, hard red flaky spots on skin, sweating, rib pain under breast unbearable. They injected me with cortisone. I can’t work out, heavy breathing, legs feel heavy with little activity. Liver enlarged, trace blood in urine, kidney stones for the 1st time with 2 surgeries. 5 months later, more stones. No one recognizes me, skin is dry, nails brittle, red itchy eyes, joint pain, severe anxiety, headaches, heart palpitations, abdomen distention, random bruising especially on feet. Feet very hot and swollen, hands swell, constipated, nose bleeds, dizzy. I have lost my entire quality of life, I was so active. Tests come back “normal” but drastically not normal compared to before I started. Poison."

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

Ocrelizumab for Multiple Sclerosis "Diagnosed with multiple sclerosis in 2013. Taken Tecfidera, Gilenya, Plegridy, & 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 in 2019 has done nothing at all. Lost my job, now walk with a cane, balance & pain worse. Six months is too 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)."

• Anonymous
• Taken for 1 to 2 years
• September 24, 2020

Ocrelizumab for Multiple Sclerosis "I was diagnosed with MS at age 53, started with Ocrevus 2 years ago (my first and only medication for MS). Infusions always go well, just tired from Benadryl. I do have some dizziness day 3 and 4 after infusion. I lost hair after the initial dose, but none since. I get more fatigued with each infusion. It took me a month after the June infusion to function. The improvement of my leg and body numbness is 100 percent, lesions same but not worse. My body does know after 4 1/2 to 5 months I'm due for it again. I get head and arm pains, but that's MS, not the Ocrevus. Not having drop foot, electrical sensation down my back, or numb from almost half my body is worth it any day. The cost is 6 figures, insurance always covers 100 percent. I have new insurance since I lost my job, so we will see. Lowers immune system, so with COVID, not seeing family and being social is a sacrifice, hopefully that's temporary."

• Hol...
• Taken for 2 to 5 years
• November 10, 2021

Ocrelizumab for Multiple Sclerosis "Diagnosed with advanced RRMS in 2016 at age 30. Started Aubagio and took that daily for a year or so. No help whatsoever, neurologist recommended Tysabri. Didn't mind the monthly infusions, and my body tolerated it well. No new lesions, but I tested positive for the JC virus a year in, so the doctor switched me to Ocrevus. Have been taking this for the last 2 1/2 years. Have also been tested for the JC virus 1-2 times a year. It was nice to only have infusions twice a year, but the headaches and horrible acid reflux I would get afterward kept me up for days. Noticed thinning hair and major depression, irritability, mood swings lately. The weeks leading up to my infusions, I have daily headaches, dizziness, and fatigue. It has kept my lesions at bay, I don't feel much better. I'm always tired. Keeping tabs on the JC, the doctor was sending me for the wrong tests. The new test shows JC+ again at 2.4, way over. He says stay on Ocrevus, but I'm discontinuing so as to not get PML."

• Anonymous
• Taken for less than 1 month
• September 9, 2021

Ocrelizumab for Multiple Sclerosis "I was diagnosed with MS around the time of Hurricane Dorian, although I had had the leg numbness for years. Never thought anything of it. But yeah, I couldn't walk. I was 20. Took both of my parents to lift me, dead weight. Drive me out near Baltimore for an MRI. Couldn't stop vomiting, so they had to hold me for five days. Medical Center's final prognosis? Multiple Sclerosis. Had been on Tecfidera because my mother, who also has MS, was on it. It didn't really help. Would get MRIs every few months. More lesions on my brain and spine, and it's like they kept popping up, like acne. I believe I have PPMS right now. About a month ago, my neurologist was tired of all my symptoms getting worse. The back pain, the lack of coordination, dizziness, memory loss, vision problems, so she switched me to Ocrevus. As of yesterday, I have had two half doses, and although at first it seems like it's getting worse, I can only wait. Next dose? March 1st of next year. My birthday."

• Anonymous
• Taken for less than 1 month
• September 9, 2021

Ocrelizumab for Multiple Sclerosis "I was diagnosed with MS around the time of Hurricane Dorian, although I had had the leg numbness for years. Never thought anything of it. But yeah, I couldn't walk. I was 20. Took both of my parents to lift me, dead weight. Drive me out near Baltimore for an MRI. Couldn't stop vomiting, so they had to hold me for five days. Medical Center's final prognosis? Multiple Sclerosis. Had been on Tecfidera because my mother, who also has MS, was on it. It didn't really help. Would get MRIs every few months. More lesions on my brain and spine, and it's like they kept popping up, like acne. I believe I have PPMS right now. About a month ago, my neurologist was tired of all my symptoms getting worse. The back pain, the lack of coordination, dizziness, memory loss, vision problems, so she switched me to Ocrevus. As of yesterday, I have had two half doses, and although at first it seems like it's getting worse, I can only wait. Next dose? March 1st of next year. My birthday."

• Per...
• December 27, 2019

For Multiple Sclerosis "Well, from my experience with treatment with ocrelizumab, I would prefer to have my relapses because at least in between them I had a bit of relief from symptoms. Now I don't get any relief. It makes me constantly fatigued, it's given me extreme lower back pain and hip burning, my body feels like I've run a marathon when I walk, so I'm on crutches. My right leg feels like it has an elastic band around my groin, so the numbness is persistent. I have extreme confusion about everything, and dizziness takes over, so I must sit. It's changed my personality in a bad way; I'm constantly angry and frustrated. I go from being extremely depressed, anxious, and crying about having to leave the house out of fear to the complete opposite, which is laughing about anything and everything. It makes me feel out of control of my body, and I'm constantly in pain and I'm constantly exhausted. This is just everything I've experienced since starting this treatment. It could be different for you."

• Gin...
• Taken for 1 to 2 years
• June 1, 2024

Ocrelizumab for Multiple Sclerosis "Dr. Ron Sam Bandam, Clermont, Florida. Some of my side effects of Ocrevus include: Some hair loss, a cough after getting Covid attached to the mucous membrane, constant diarrhea, eczema and dermatitis on my hands, migraine headaches, constant aggregation of optical nerves in the left eye. Prior to getting the medication, I have had MS relapses such as headaches, vertigo, weakness in legs, and fatigue."

• Do-...
• Taken for 1 to 6 months
• April 16, 2023

Ocrelizumab for Multiple Sclerosis "60 yr old male (for sure). Unremarkable MRI's y2010 brain and CC. Fast PPMS since Dx 1/23. The first symptoms in y2017 were tinnitus and slight dizziness followed by hand tingle. MRI's y2021, 2 CC lesions, and 20+ brain foci. 3/2023 Lt hand is very stiff and swollen with 70% loss of function/fine motor and left shoulder weakness and pain. Left drop foot with 15% walking difficulty, severe fatigue, dizziness, urine urgency, itchy skin, etc. Strange small pimples reoccur on the head and shoulder. No never vision, speech, or cognitive but lots of frustration. My dx did not require a spinal tap. SP TAP may likely cause complications. First, talk to others that got it. I did. 1st half dose of Ocrevus with premeds methylprednisolone and diphenhydramine - mild sore throat. I denied the methyl-p for 2nd dose and no reaction/nothing. Side effects of methyl-p are what we want to avoid - look it up!! To those who say Ocrevus has made it worse, I say verify you are 'actually' getting the 'real $$$$$ med' in your IV. The jury is still out."

• Diz...
• Taken for 2 to 5 years
• November 17, 2019

Ocrelizumab for Multiple Sclerosis "On Ocrevus, I feel terrible. Very dizzy, can't leave the house or do anything, my head feels very heavy. I feel awful vertigo."

• Diz...
• Taken for 2 to 5 years
• November 17, 2019

Ocrelizumab for Multiple Sclerosis "On Ocrevus, I feel terrible. Very dizzy, can't leave the house or do anything, my head feels very heavy. I feel awful vertigo."