Ocrevus and Weakness: What Users Say

• 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!"

• Rez...
• Taken for 1 to 2 years
• January 4, 2021

For Multiple Sclerosis "I was diagnosed with PPMS in January 2018 and my neurologist put me on OCREVUS. At the time of diagnosis of MS, I just had a little numbness in my left hand and a little weakness in my right leg. Now, after two years and three OCREVUS infusions, which were supposed to help slow down the disease progression, unfortunately, I am using a walker for walking at home due to a lack of balance, too much spasticity, weakness, numbness, bladder issues, and low back and neck pains! I believe this drug has destroyed my life. I think if I hadn't used this drug, my MS disease would not have progressed to this level. But I felt I had no other choice because my neurologist said this is the only medication for PPMS! Please be cautious when considering this medication."

• 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!"

• Car...
• Taken for 1 to 2 years
• July 5, 2021

For Multiple Sclerosis "Unfortunately, Ocrevus made all of my MS symptoms worse and even gave me some new symptoms. I was on Ocrevus for 3 infusions (1.5 years). After one year of being off of Ocrevus, I am back to my baseline. This drug gave me incredibly bad pain - muscles and joints, including Trigeminal Neuralgia (never had it before O and it's gone now). I felt nauseous on this drug, had horrible migraines, and the weakness in my legs increased. It also gave me cystic acne. I am much better now that my WBC is back up, but it took a whole year for my labs to normalize and to feel better. I thought it was an awful drug, but everyone is different! I had no new lesions, but I did progress and feel worse than before I started taking it. I will say that the neuro didn't report my adverse effects even though I was on a clinical study - so I am wondering if they only report lesion activity."

• 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."

• 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."

• Yor...
• Taken for 1 to 2 years
• January 22, 2020

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!"

• 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!"

• Way...
• March 24, 2019

For Multiple Sclerosis "I am 68 years old with relapsing-remitting MS (multiple sclerosis) for 23 years. Have taken Betaseron and Copaxone. Take Ampyra. No problems with the injection site but discontinued both Betaseron and Copaxone due to muscle cramps. MRI is stable, but my neuro suggested Ocrevus. Only had one infusion. Didn’t return for the second half of the first round. My neuro and I agree to discontinue Ocrevus for me for good. Side effects of Ocrevus were immediate and severe. Six weeks in and I am still recovering from the infusion. Immediately after the infusion, which I slept through, I awoke unable to recognize my surroundings. I did recognize family, but I felt I was in a nightmare. Cognition was altered and diminished. I was also very weak, especially my legs-extremely frightening. Severe confusion resolved mostly in 24 hours, slowly. The weakness has lingered, requiring pulse steroids with partial resolution. Slowly improving with rest, exercise, and prayer. The infusion was worse than any flare in my 20+ years of MS. Currently hesitant to start another DMD."

• 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."

• Anonymous
• July 26, 2021

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."

• Gin...
• Taken for 1 to 2 years
• June 1, 2024

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."

• Do-...
• Taken for 1 to 6 months
• April 16, 2023

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."

• Ocr...
• Taken for 6 months to 1 year
• August 26, 2021

For Multiple Sclerosis "Ever since I started using Ocrevus, after each infusion I was weaker, my balance was off even more."