Ocrelizumab and Pain: What Users Say

• Bec...
• July 8, 2021

Ocrelizumab for Multiple Sclerosis "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 difficulty swallowing. My calves started having severe spasticity and pains, but after 30 minutes, this was gone. Had some throat scratchiness, like that of starting 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 fingertips 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."

• 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!"

• 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!"

• K M...
• March 25, 2020

Ocrelizumab for Multiple Sclerosis "I have RRMS, 37-year-old F. I have been on Ocrevus for 2 years now. Prior to this, I was on Betaseron and Tecfidera. This is by far the best medicine for me. It’s helped me. I take it every 5 months because I was crashing before I reached the 6-month period. It’s FDA approved that you can take it every 5 months if you are having that problem. It helps keep my leg pain, blurred vision, and fatigue at bay. Of course, I take medicine for those problems, but the combination of it all is a plus. What I don’t like is the infusion, at first, it’s hard on your body. The first treatment was horrible. The premeds help before treatment, which is Tylenol, steroids, IV Benadryl, and a toroidal shot. That combination 30 minutes before treatment works well. After the first treatment, it gets easier. Overall, it works for me, and I love it. I pray it works for others."

• Anonymous
• July 26, 2021

Ocrelizumab for Multiple Sclerosis "My boyfriend was diagnosed in 2002, was on Rebif for a few years until he was switched from RRMS to SPMS, and back then nothing else for him. When Ocrevus came out, everyone raved about it. Thom had been without meds for 10 years, so he was pretty anxious to start, especially with all the positive reviews. The first half, he started to experience more leg pain, after his first full dose, he became so weak he was bedridden, could not roll over in bed, could not hold himself up in a chair, I would strap him in. All of his symptoms went into overdrive. His doctor and everyone from Ocrevus groups said give it time. He was on this poison for 2.5 years, along with all of his symptoms worse and the weakness he had hair loss, extremely dry flaky skin, skin lesions, bacterial infection in his nose, extreme constipation. It's been 19 months since his last infusion, and thank God he is 95% back to his baseline. All these doctors are calling it progression, but in actuality, it's this poison."

• 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."

• 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."

• 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."

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

Ocrelizumab for Multiple Sclerosis "My daughter was diagnosed with MS when she was 16 years old, about 24 years ago. She tried Avonex, Copaxone, 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."

• 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."

• Ggg...
• Taken for 1 to 2 years
• August 5, 2020

For Multiple Sclerosis "This ocrelizumab medication is awful. After my fourth infusion, I got so much pain in my leg that I can hardly walk. The pain is so severe that no over-the-counter medication can help, I ended up in the ER. The doctor gave me Norco. He gave only a few, and pain doctors in the hospital refuse to give me any more. The pain is life-draining, and they are worried I will get addicted to the pills. I have brain fog. I have to take weed, unfortunately, that just knocks me out without any relief. Lately, I am having pain in my eyes and head that they put me on migraine pills. I don’t even know if the pills are helping me. The pain in my leg is so bad, so bad that life had no meaning anymore. This company does not care a bit about us. $6,000 a year is too much money to care about what we are going through. I am counting the minutes to get this out of my system. Or I am hoping,..."

• 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."

• Bam...
• Taken for 1 to 2 years
• March 5, 2020

Ocrelizumab for Multiple Sclerosis "Each time I have had an infusion, I have 2-3 weeks of horrible pain: back, hands, knees, legs, and feet. The bad pain eventually stops, but I am never without pain."

• Bam...
• Taken for 1 to 2 years
• March 5, 2020

Ocrelizumab for Multiple Sclerosis "Each time I have had an infusion, I have 2-3 weeks of horrible pain: back, hands, knees, legs, and feet. The bad pain eventually stops, but I am never without pain."

• Bam...
• Taken for 1 to 2 years
• March 5, 2020

Ocrelizumab for Multiple Sclerosis "Each time I have had an infusion, I have 2-3 weeks of horrible pain: back, hands, knees, legs, and feet. The bad pain eventually stops, but I am never without pain."