Ocrelizumab and Fatigue: What Users Say

• Joa...
• October 17, 2019

For Multiple Sclerosis "I have had two half doses of Ocrevus, and my fatigue is almost totally gone. I felt a difference right away. Seems like it improved on the very first day. I have RRMS. All my functioning seems to have improved. I was on Tecfidera for 3.5 years, and it went well, but had to stop. Tried Aubagio, reacted, had to stop. When Aubagio was all gone, tried Ocrevus. Relief! Without Ocrevus, my left leg was starting to drag, fatigue was strong, walking was harder, trouble with cognition and memory. The first day after infusion with Ocrevus, I felt a difference, almost like I don't have MS. Reading all these reviews, I wonder if there are types of MS that respond better than others. It is interesting to see some people have no help with Ocrevus and others feel better. I am glad I am one that is better. All the best to anyone fighting MS, it's no picnic. Wish everybody well."

• Bec...
• July 8, 2021

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."

• Ais...
• April 11, 2020

For Multiple Sclerosis "Diagnosed RRMS in 2011. Been on Rebif, Tecfidera. Started my first two halves of Ocrevus in May 2019. I had less fatigue. I did notice I became more clumsy. Told my doctor. He said to keep taking it, it will get better. First full dose in October 2019, the clumsiness got even worse. I can't lift my feet. I went from lightly walking with a cane before Ocrevus to using a rollator. It does work for a lot of people, but people need to realize that a small percentage of us are becoming more disabled. I called the company and asked them about their trial. They said there is a small few that have problems with walking. It took me forever to find this page to figure out that I was not going crazy, something was really wrong. I have a new neurologist now that wants to say that I have progressed to SPMS, but I'm telling him to hold on. Does this drug make you progress, or do you have to wait for this to wear off? Anyone, when you stop taking it, do you ever get better with walking, and how long does it take."

• Nin...
• June 28, 2020

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

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!"

• LCa...
• Taken for 1 to 2 years
• May 18, 2019

For Multiple Sclerosis "Diagnosed in 2015 after a major flare-up of multiple sclerosis (MS) with multiple active lesions on the brain, neck, and spine. Tried Avonex, Tecfidera, and Copaxone but still continued progressing with new lesions. Started Ocrevus in November 2017 and have had no new MS disease activity since, it is working! I've had 2 half infusions and 3 full infusions since starting. Less fatigue, fewer muscle spasms, fewer cognitive problems, better balance, overall, I've just felt great since starting."

• Man...
• Taken for 2 to 5 years
• April 15, 2023

For Multiple Sclerosis "I was on Ocrevus for 3 years, so essentially 6 infusions, I believe. I was diagnosed with MS in 2005 when I was 21 years old and failed most of the baseline MS drugs due to side effects. I had a stint of no medications for 7 years with stable MRIs, but my neurologist convinced me to try Ocrevus since it seemed convenient to just 2 infusions a year. The first few infusions were rough; I experienced really bad inner bone aching. My arms and legs just felt like a toothache. My neurologist said he never heard of this and said it was unrelated. I disagreed. 2 years in, I had 3 teeth randomly crack while eating, needing crowns. Again, my neurologist said it was unrelated to the Ocrevus. By year 3, the hair loss, fatigue, and overall feeling of body weakness have gotten worse, so I decided to skip an infusion to see if it is the Ocrevus making me feel sickly… 8 months since my last infusion and I’m finally starting to feel human again, like I did before starting."

• Liq...
• Taken for less than 1 month
• September 9, 2020

For Multiple Sclerosis "After just having one Ocrevus infusion, my experience is as follows: I will not take this drug ever again! Why? The two big toes on my feet are black and falling off, the joints on my hands, ankles, fingers, and knees hurt, I have extreme fatigue, the knuckles on both hands are black, and I can no longer bend my legs!"

• Pau...
• Taken for 2 to 5 years
• July 16, 2019

For Multiple Sclerosis "I was diagnosed with MS in 2015. Had a large attack. Was prescribed Copaxone. I liked it in the beginning, but after a while, I was skipping certain parts of my body because of a reaction. When I started Ocrevus, I felt like a miracle had happened. I feel as good as I can feel. I started driving, including on a freeway. I don't feel fatigue like I used to. And no shots, just twice a year. I love it. The only BIG downside: over $100,000 per dose? Really? I think it's way overpriced. It's a great medicine, but somebody is making billions of dollars on it."

• Ala...
• Taken for 1 to 6 months
• June 24, 2023

For Multiple Sclerosis "I was on Gilenya for 7 years. Because of my insurance, I had to switch to Ocrevus. I was excited because it has better results based on the studies. Two days after my first infusion, I got strong fatigue and a feeling of pressure in my brain. It stopped after 10 days. I decided to do the second infusion 15 days after. Exactly the same experience. I got the exact symptoms two days after the second infusion. It lasted 8 days. - pressure in my brain - hard to think, focus - feeling of falling when I close my eyes. Two weeks after, for no reason, I got the same experience again for 15 days."

• Ksa...
• Taken for 1 to 2 years
• February 28, 2020

For Multiple Sclerosis "I am 58 and have had MS for over 35 years, I am now SPMS. I have been on Copaxone and Betaseron. I started Ocrevus in December 2018. I was excited because it was only twice a year. It has worked well for me, has lessened my fatigue, and there has been no progression (which is a good thing). I am so sorry for all those people who have not had any success with it."

• Ron...
• Taken for 2 to 5 years
• April 26, 2020

For Multiple Sclerosis "I have started my second year on Ocrevus and have gotten worse by the day. I wish I had never taken this drug, but my neurologist said I should, so I did, and there has been no improvement with anything, just worsening of symptoms! I’m 46, and balance, fatigue, and weakness, among other things, have become so much worse! It did not help my PPMS, it has just made things far worse for me."

• GGG...
• Taken for 1 to 2 years
• June 12, 2022

For Multiple Sclerosis "Wish I had found this site before taking the infusions. Started feeling some worsening of the side effect symptoms during the 2nd infusion, so I googled patient reviews that confirmed to me it wasn’t my imagination, as the neurologists say and refuse to listen! The worsening of my symptoms and some new ones includes reduced mobility and increased fatigue and sensations, but what jumped out at me was the review on here about TMJ! That reminded me I had experienced incredibly painful TMJ after the first infusion, but had never related it to the infusion, as neurologists unanimously say it wasn’t! I had forgotten about it until it returned immediately after infusion 2, even worse, so despite not being keen on medicating, I’ve had to resort to taking anti-epileptic Tegretol in addition to Pregabalin to try to manage excruciating pain. I’m never taking Ocrevus again, but will the new/worse effects ever go away?"

• she...
• Taken for 6 months to 1 year
• October 21, 2018

For Multiple Sclerosis "It did not work for me at all. I started the treatment in my 15th year of MS, and I got quite a bit worse. After being on it for one year, I told my doctor no more! Now I have trouble walking, and fatigue is way worse. Another of the side effects that affects me is rapid heartbeat and faster breathing that still hasn't gone away, and my last infusion was 7 months ago. I'm older, 57, and there are numerous cases where older people like me do not respond well to Ocrevus. So if you're in my age range, proceed with caution, but I would not recommend it!"

• Joh...
• Taken for 5 to 10 years
• January 8, 2025

For Multiple Sclerosis "Ocrevus has been a game changer for me. I still get fatigued, but my walking has improved, and I have less bad days. It took almost 2 years before I noticed real improvement. I now have been on it for 5 years and am doing quite well. MS is a disease that has many aspects and impacts people differently. If Ocrevus doesn’t work for you, try another treatment and move on. I am frankly tired of hearing people complain about their MS and seeking attention. Those of us who have MS need to learn that constant complaining is not a cure."

• Mic...
• Taken for 2 to 5 years
• January 2, 2025

For Multiple Sclerosis "I started Ocrevus at the end of 2022, five infusions. I was diagnosed back in 1997 at the age of 33 (male and fit soldier) with probable MS. MRI indicated a 20mm lesion at C2/C3 and nowhere else at the time, but I had multiple injuries to vertebrae and joints. So it was a bit of a mystery until 2022 when my left eye got stuck to the left a bit and is still off track and a problem. The ophthalmologist ordered an MRI of the brain and found a lesion. So back to the neuros, and after numerous MRIs since 1997 and visiting several different neuros, it was concluded after some discussions by a team of neuros that I have SPMS. Finally, a proper diagnosis and the mystery is somewhat over. Neuro said don't be hard on previous neuros and MRIs, as we have better knowledge, drugs, and better MRIs since 1997 (by the way, I thought it was due to damaging my neck sustained from dropping a heavy board on my head). Since taking Ocrevus, my cognitive and coordination has declined really badly, and fatigue is worse."

• Lul...
• Taken for 6 months to 1 year
• February 26, 2019

For Multiple Sclerosis "First treatment, my fatigue was horrible, didn't feel like getting out of bed. Told the doctor I wasn't sure I could deal with another infusion, he convinced me the second one would be better. Wrong! After the second one, both of my legs are very weak, not just one, and I can no longer drive and take care of my children. It has taken the most special time with my kids away."

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

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."

• K M...
• March 25, 2020

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."

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

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."

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

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

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."

• DM1...
• March 7, 2020

For Multiple Sclerosis "I am so happy that I came here because I needed to hear from someone who understood. 4 infusions, approximately 3 weeks ago. I have never felt worse in my life. Sudden aches out of nowhere. My mobility is not much better, not being able to control my bladder, and I am going every 20 minutes. Praying to God this time you make it without an accident. The 1/2 infusion, I felt great and thought, great, let’s pray this is the one. Not having the energy to do anything but Netflix, and Netflix, lol. I will be refusing that next dose and pray this is something that will wear off."

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

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 :)!!"

• Car...
• Taken for 1 to 2 years
• October 20, 2020

For Multiple Sclerosis "Please read this if you are thinking of stopping your Ocrevus treatment. First half infusion (pre-COVID): slight fatigue after it, had to work from home for a few days and sleep a lot. Second half infusion: horrible side effects: off work for 10 days as a result. Spent my birthday in bed :( I told myself I would never use this drug ever again. Was not possible to switch, so did not have any other choice than to stick to it. First full dose infusion (about 10 months later due to COVID): I went to the hospital reluctantly, expecting the worst again... but to my surprise, I did not need any time off work after the infusion, I have felt more tired for sure, but nothing unbearable. So give it another try if you are hesitant. My MRI shows no new lesions and some have shrunken..."