Ocrelizumab and Itching: 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."

• Jes...
• Taken for 2 to 5 years
• March 25, 2021

Ocrelizumab for Multiple Sclerosis "I have PPMS and have been on Ocrevus for 2 years. I was previously on Copaxone but still had lesions develop while on it, and I absolutely hated the shots every other day. I always got a large welt and severe itching. Before that, I was on Aubagio, which made me feel awful. I do get some mild reactions with the Ocrevus infusions, like headache, itchy throat and ears, and rapid heartbeat, which usually lasts until the next day. I also get immediately sleepy from the Benadryl but then cannot sleep for a few days from the steroids. I am also constantly fatigued and have developed some skin lesions. However, it is all worth it to have my last 2 MRIs show no new lesions. This is the first treatment that I have been on that has done that. When I was first diagnosed, my doctor said I would probably be in a wheelchair in 10 years. Well, it’s been 7, and although I use a walker for balance reasons, I have had no further progression for the last 2 years on Ocrevus, which is what it is all about!"

• Kyl...
• Taken for 1 to 2 years
• November 12, 2020

Ocrelizumab for Multiple Sclerosis "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 an 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 continue the at-home exercises, but for me, Ocrevus has been a godsend."

• lan...
• Taken for less than 1 month
• October 13, 2024

Ocrelizumab for Multiple Sclerosis "I am newly diagnosed with MS and have experienced two flare-ups in 4 months. I have reduced feeling in both lower legs but feel so lucky this is the only long-term effect I have so far. I just had my second loading dose of Ocrevus. During the first dose, I had a slight facial reaction where my jawline became very itchy and red, but this went away by slowing the rate down and having a small break. My second dose had no reaction at all. I haven’t experienced any flu or cold feelings, but do feel pretty knackered. The antihistamine didn’t knock me out like it seems to for others, the steroids also didn’t keep me awake that night. I am wholeheartedly optimistic and believe that the treatment will work to slow everything down because it has to. I worry about the future, but I think that MS forces you to live in the present, which is no bad thing. Hopefully, in the next 6 months to a year, Ocrevus will evidence that it’s working for me. Best of luck on your choice too."

• Joa...
• Taken for 5 to 10 years
• May 28, 2024

Ocrelizumab for Multiple Sclerosis "I was the first person on the second Ocrevus trial eight years ago. It's been a real game-changer. No new lesions, maybe some exacerbations of old symptoms at times, especially if I get an infection. I'm grateful that I was chosen to trial this drug. It's my third drug. Copaxone was first, I reacted badly with my skin. Tecfidera was second, that lowered my white lymphocyte count dangerously low and I felt awful, had rashes all over my body, and itching. My disease was bordering onto primary, my neurologist was running out of options, then he mentioned this new drug trial and my ears pricked up immediately. Ocrevus has definitely changed my symptoms for the better, so I have no regrets."

• eye...
• Taken for 1 to 2 years
• June 16, 2021

Ocrelizumab for Multiple Sclerosis "I have had very minor side effects while taking Ocrevus for the past year and a half. The only side effects I have experienced have been redness at the infusion site and itchiness, which does not bother me as much as losing my vision for a week, my sense of smell, or taste. Since I have been on Ocrevus, I have been fine, no relapses, nothing. I am a happy patient. I have not had a relapse since 2019 and have no new lesions or worsening of current lesions. That sounds like remission for me, but unsure until July 27, 2021, when I see my neurologist."

• Ano...
• Taken for 2 to 5 years
• April 1, 2022

Ocrelizumab for Multiple Sclerosis "I am concerned about this drug, which a family member has received via infusion approximately the past 2 to 3 years. He has had no complaints until this past February when he began to complain of itching in the pectoral (nipple) area, both right and left, with florid rash in the area. The rash recently calmed after the application of A&D ointment. However, it is concerning, and we are wondering whether any other Ocrevus patients have experienced anything similar. We are seeing whether it resolves, but if it does not resolve soon, we will make a doctor's appointment."

• Ano...
• Taken for 5 to 10 years
• April 9, 2025

Ocrelizumab for Multiple Sclerosis "I experience extreme fatigue 6 to 8 weeks prior to my second infusion each year. Along with the fatigue, I have numbness in my and intense itching. Impacts ADLs, travel, and socializing. Prior, I was fine, felt very well once I had the infusion, my only issue is the effect just prior to the second dose."

• KMk...
• Taken for 1 to 2 years
• July 29, 2021

For Multiple Sclerosis "My brother is getting the Ocrevus infusion treatment for PPMS, and he has been having issues with neuropathy, tingling, and itching on his foot. He has also been having updates on his brain lesions, and he has recently been having to see a urologist. He is having issues with his urine, and the doctor is doing tests for his prostate, and now his kidneys and the mental issues. The left side of his body is not working properly, and he has been getting the infusion since 2018."

• 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."