Ocrelizumab and Rash: 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!"

• 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."

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

Ocrelizumab for Multiple Sclerosis "I only had one Ocrevus infusion so far, and in my opinion, 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 than when I was on Gilenya. The first therapy I was on was Betaseron, and it was the absolute worst. Even with the 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 :)!!"

• Mar...
• Taken for 1 to 2 years
• September 12, 2021

Ocrelizumab for Multiple Sclerosis "After my dx, I chose Rebif. One year later, my neurologist suggested a new treatment that would alleviate the muscle aches, tiredness, stomach pain, runny nose, skin discoloration, and elevated liver function test associated. When I started this drug, I tolerated the introductory split dose but should've stopped after the 1st full dose WHEN I STILL HAD THICK HAIR BEYOND MY SHOULDERS! Every infusion to follow is split in half, they say the symptoms will subside. They didn't, they got worse, and now I'm somewhat of a weak hermit. My stomach and calves hurt, I don't recognize my face or my handwriting, and when I talk to them about the side of my face that droops, the hemifacial trigeminal twitching, they attribute it to caffeine! My skin is dry, my scalp itches, and I develop a rash on my chest, neck, and ears after infusions. I can see my scalp, my hair is thin, I have headaches, no strength, and zero energy. I don't care about lesions, and I don't mind wearing face masks."

• 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."

• Bel...
• Taken for 6 months to 1 year
• December 19, 2024

Ocrelizumab for Multiple Sclerosis "When I first started treatment, it was awful. During the first two infusions, I developed a rash and a headache, and they had to stop the drip for 30 minutes to an hour before restarting. Physically, it wrecked me. I ended up needing anti-anxiety medication because the experience was so overwhelming. The fatigue was unbearable—I couldn’t move some days and had to take modafinil just to get out of bed. My body felt so heavy, I’d get out of breath easily, and even yoga became impossible—I’d have to run out to throw up. It felt like poison, and there were moments I wanted to give up. But my neurologist told me to stick with it for 12 months before considering a change. As hard as it was, I trusted them. Now, looking back, it’s amazing to say I wouldn’t change my treatment. Over time, things improved, and it’s been life-changing. It was the hardest thing I’ve ever done, but it was so worth it."

• 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."

• CBa...
• Taken for 1 to 6 months
• July 24, 2018

For Multiple Sclerosis "Within a month after my initial infusion of Ocrevus (Ocrelizumab), I experienced a severe exacerbation of my MS symptoms and also what I thought was a rash all over. After having the areas biopsied, it was determined it was Bowen's Disease. I have had numerous sessions with my dermatologist to freeze these areas off, and they continue to return. I now have unexplained lesions, not MS lesions, in my spine. I recently had a colonoscopy, and they discovered a mass which has tested to be Bowen's Disease, early skin cancer. The neurologist has completed over 30 tests to try and determine another source for all these issues, and it all comes back to being caused by Ocrevus. They have taken me off the Ocrevus infusions. I am scheduled to have colon surgery to remove the mass."

• 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."

• Bjs...
• Taken for 1 to 6 months
• December 12, 2019

For Multiple Sclerosis "Switched to Ocrevus from Tysabri, which I took for 12 years. I became JC virus positive, low titer. MS specialist wanted me to change. First two of the half doses were fine. Then the whole dose left me with side effects that have lasted 4 months. These include joint pain, muscle aches, peripheral edema, rapid pounding heart rate, rashes, painful scalp. I feel horrible, worse than I've ever felt before."