Ocrelizumab and Headaches: 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!"

• DMC...
• Taken for 1 to 6 months
• August 2, 2020

Ocrelizumab for Multiple Sclerosis "This was my second try for Ocrevus because the doctor wanted me on a treatment for MS. Guess what? I quickly know and remember now why I didn't want to be on this or continue with Ocrevus! Since my infusion on 6/29/20, I have felt terrible: severe fatigue, on and off depression, severe muscle aches at the back of both upper legs... trouble walking, feet sticking to floor causing falls or slides on carpet, headaches, and some cognitive issues on and off. So tired even after some sleep at nighttime. MS stinks, but when taking something that's supposed to help causing worse issues than began with, it really is more than stinks, it sucks! I definitely will not go on this ever again... just hoping this gets out of my system soon!"

• 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!"

• KBa...
• Taken for less than 1 month
• April 23, 2020

Ocrelizumab for Multiple Sclerosis "I was having trouble walking—poor balance, stiffness, slowness, and super heavy feeling legs. I went in for my first Ocrevus treatment yesterday—half dose and second one in two weeks. Had a rough night sleeping...abdominal pain, headaches, and nausea. Woke up this morning and feel great! I don’t know if it’s a placebo effect or not, but I feel like a different person. I am walking without stiffness, lumbering, or heaviness in my legs. It could be the pretreatment of steroids I suppose, but my initial response is cautiously optimistic."

• DRB...
• Taken for 1 to 2 years
• August 24, 2019

Ocrelizumab for Multiple Sclerosis "After using Rituximab, which really worked well for my multiple sclerosis (MS), my specialist put me on this medication Ocrevus, explaining it was really almost the same thing. Unfortunately, even though I have not had new lesions on this drug, I feel worse. After the first infusion, I was ill for three weeks. The second, one and a half. Third, ditto. My muscle aches and cramps are back, I have next to no energy, and terrible headaches. My next infusion should be in February next year, but I'm going to see if I could go back to Mabthera (Rituximab)."

• 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!"

• 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."

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

Ocrelizumab for Multiple Sclerosis "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 of muscle twitches, but I don't know if that was anxiety from taking the medication and being worried about getting an infusion reaction. So overall, this was a very good experience, and I had no issues taking it, no reaction to the infusion, and my headaches mostly went away :)"

• 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."

• 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."

• 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."

• 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."

• Pet...
• Taken for 2 to 5 years
• June 24, 2023

Ocrelizumab for Multiple Sclerosis "I’ve been on Ocrevus for 5 years, and my only relapse in that time was a pseudo-relapse after my first half dose. After infusions, I typically feel very fatigued, bad headaches, but after 2-3 days, I normally get better and feel awesome. My last infusion, 2 weeks ago, I felt horrible for about 5-7 days. This is my 5th MS therapy and the only one that’s worked this far. Considering my symptoms haven’t been worsening, with no new symptoms and no significant relapses, I would definitely recommend anyone with RRMS talk to their doctor about starting this therapy."

• TLC...
• Taken for 1 to 6 months
• October 5, 2021

Ocrelizumab for Multiple Sclerosis "Was diagnosed with MS in 2004 at the age of 26. Started on Betaseron, left knots at the injection site. Copaxone, my body got used to, so I was switched to Tecfidera. Was on Tecfidera for 10 years, loved this med, no flare-up until my last year on it. I was feeling a little weak in my legs, so my neurologist put me on Ocrevus. The first infusion went well, just a little fatigue and headache. Took the second half dose two weeks later, everything was good until a couple of days later, my right leg went completely out. My right arm was so weak I didn't want to lift it. I had an MRI done because of my relapse, it showed I had a new lesion on my brain. This is my first relapse in 10 years. I don't know if it was the change in medicine or if it was just time for me to relapse since it has been so long. My leg was completely out for almost two months, and my arm still has little use. I am going to physical and occupational therapy now. My leg has gotten 70 percent better. Arm at 18 percent, scared to do the next dose. Help?"

• Geo...
• Taken for 2 to 5 years
• June 22, 2024

Ocrelizumab for Multiple Sclerosis "I got healthier. Mild allergies I didn't even know I had went away. My eyesight got better, memory, stamina, math abilities, playing games got better. I got a new neurologist, and after two and a half years improving on this drug with no bad side effects, he overreacted to a false positive for hep B. I got no MS medication. I was given Entecavir which gave me headaches and made me sleepy to the point all I could do was exercise, bus shopping, and sleep. I couldn't clean, eat right, or interact with people much. I quit when I almost passed out. The doorknob, which is the last thing people see before going unconscious. Been about a year since I had any MS drugs. I'm looking for information now."

• 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."

• Loz...
• Taken for less than 1 month
• October 22, 2020

For Multiple Sclerosis "Just finished my first two half doses over the past fortnight. After the first one, I was buzzing from the steroids and got loads done but knackered myself out! Second half dose 4 days ago and had the most terrible headache for two days. Feel so exhausted, but that could just be my MS. I’ll take anything to stop it progressing as there’s nothing else for PPMS, and I’ll fight it with anything. Keep up the natural supplements to support your immune system."

• Mar...
• Taken for 1 to 6 months
• February 27, 2023

Ocrelizumab for Multiple Sclerosis "No side effects, but tiredness and a little headache."