Ocrevus for Multiple Sclerosis User Reviews (Page 4)

• Eri...
• Taken for 6 months to 1 year
• January 19, 2022

"I got diagnosed with MS in 2016. I was on Copaxone first, but I just kept getting new lesions. Lost full control of the right side of my body. I got it back mostly via steroids. I switched to Ocrevus for about a year. In that time, I had UTIs more often than not. I even got a gum infection from a routine dental cleaning. I was absolutely miserable. I switched to Tysabri and haven’t had a UTI since. I hope this helps someone."

• Sal...
• Taken for 2 to 5 years
• November 13, 2020

"I have had MS for 18 years. Ocrevus is my third drug. Been on it for 3 years. Thought I was doing well until my neurologist stopped it. I’m the second person in his practice that has suffered a perforated bowel needing a colostomy. Hopefully, my surgery after 3 months can reverse the situation and I will no longer need the bag. It’s awful. There is no other reason for that to have happened to me. This drug causes serious infections. After knowing this, has this drug caused some of my other unusual health problems? Thought it was working for me, now I’m not so sure the side effects are worth it. Others in his practice have experienced odd situations. He is no longer treating his patients with this drug. BEWARE!!!"

• Pet...
• Taken for less than 1 month
• January 15, 2020

"I have SPMS (secondary progressive multiple sclerosis) now. Diagnosed in 2001. Tried Avonex, Copaxone, and Gilenya. And today got 1 dose of Ocrevus. Have to stop because of strong allergic issue. Could be because I didn't make a pause from going from Gilenya to Ocrevus, which I had to, but my doc didn't tell me. Going to take it again for 15 days. I am on stakes for 6 years. With Gilenya, I've had all the time (5 yrs) very bad liver results."

• Ron...
• May 23, 2019

"Been a year, falling more, have anxiety, nerve pain in legs, burning in calves and feet. Numb area in rectum. Gone from cane to walker. Upsetting, doctor wants another year. May be much worse. Only doing one more, and if no change, done. Feel upset and sad. Gilenya pill was better..."

• Kat...
• Taken for 1 to 2 years
• April 5, 2019

"4 for ease of use and the worse sinus."

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

"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."

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

"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."

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

"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?"

• Anonymous
• Taken for 6 months to 1 year
• April 24, 2021

"I was diagnosed in August 2020 with PPMS at the age of 51. Ocrevus is every 6 months. I had half infusions on 9/16/20 and 9/30/20, respectively, and my first full infusion on 3/29. No infusion reactions at any time. I'm curious to know what all reviewers with negative comments chose to do: get Ocrevus or not? I have seen no new lesions on MRI, but feel my symptoms are much worse, and I'm curious what everyone who responded negatively chose to do?"

• Lav...
• Taken for 2 to 5 years
• February 25, 2021

"I have been using Ocrevus just over 3 years now. The first bill I received was for just over $55,000.00, that was for one infusion. I was walking with a cane when I was diagnosed with PPMS. I’m now, and have been for a year, using a walker. I’ve noticed after about 4 months, it’s time to take another infusion. I am not sure why it can’t be administered every 4 instead of every 6 months. Still taking it, but not enough information on it yet."

• Joa...
• Taken for 1 to 2 years
• January 24, 2021

"PPMS. Been on Ocrevus about 2 years. No side effects, and so far, no changes on MRI, but MS disability progression is pretty steady. Have gone from walking maybe 1/4 mile with 1 cane to about 1/10 of a mile with 2 canes in these two years. But with MS and DMDs, how do you know? If I weren't on it, maybe I wouldn't be able to walk at all by now. There is no way of knowing. For that reason, I rated it as a 5. One thing I've noticed is some claiming that they have improved on this drug. People, NO MS drug can do that. All any of them can offer is slowing, or, at best, stopping disease progression for a while. The only treatments that have shown the ability to reverse MS damage are stem cell therapies, and the jury is out on them AFAIK. Please be realistic with your expectations."

• Wil...
• Taken for 2 to 5 years
• December 27, 2020

"Diagnosed with PPMS 4 years ago. Have been undergoing Ocrevus infusions since 2018. There has been no increase in lesions since starting the treatments. There is no trace of cancer in any of my relatives, past or present. In August 2020, I was diagnosed with breast cancer. My oncologist says breast cancer in a male over 70 years old is extremely rare. My dilemma is, do I continue the treatments and risk additional cancer developments, or stop the treatment and let the MS progress? Once again, a no-win decision!"

• Bil...
• Taken for 2 to 5 years
• December 23, 2020

"I was diagnosed with PPMS in 2017. In 2018, I began being treated with Ocrevus infusions. Subsequent MRIs revealed no additional lesions. This past fall, I was diagnosed with breast cancer and had the tumor surgically removed. I am 71 years old. There is no record of cancer by anyone in my family. My oncologist stated he never heard of a male developing breast cancer at my age. My neurological team says there was evidence of breast cancer in women during the Ocrevus trial period. My dilemma is, do I risk additional cancers, or do I stop the Ocrevus treatments and allow the PPMS to proceed uninhibited."

• Tou...
• Taken for 1 to 6 months
• December 16, 2020

"I've had MS for 29 years. No relapses for a while, no worsening MRIs for a long time. So it would seem I'm in secondary progressive stage. I was on Tecfidera since the week it was approved by the FDA, about 10 years ago. But I've been declining slowly with the usual MS stuff - fatigue, cognitive issues, walking is slow, right side is weak, and falling. So I decided I wanted to get more aggressive with my treatment than my neurologist was willing to, so I switched to another neurologist knowing he would put me on Ocrevus. I had 2 first-time infusions about 5 weeks ago. Well, now I'm scared. Since then, I had complete numbness on the right side for about 24 hours, but it did go away. Bladder has never been as bad as it is now. I feel like I have numbness traveling from foot to foot, hands, back, to the stomach. I'm pretty nervous. Thinking I might have made a mistake."

• Bet...
• Taken for 6 months to 1 year
• May 2, 2020

"Properly diagnosed PPMS last Sept. Had first Ocrevus two (split) treatments in November. Had MRI before first full dose, which showed new lesions on the brain. Infusion was 2 weeks ago and feel so fatigued, but will see what the next MRI shows. I’m going to keep persevering with the Ocrevus - this fatigue may be short term. I have not noticed any other difference, except I’m not tingling as much. I’m in Australia and it doesn’t cost anything."

• Bam...
• Taken for 1 to 2 years
• March 5, 2020

"Each time I have had an infusion, I have 2-3 weeks of horrible pain: back, hands, knees, legs, and feet. The bad pain eventually stops, but I am never without pain."

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

"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)."

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

"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."

• Lor...
• Taken for 2 to 5 years
• March 20, 2023

"Diagnosed in 2019 with PPMS at age 61. Started them right away. Seven doses later, I’m going to stop now because of chronic sinus infections following Covid. I felt it was showing me how hard it is to fight infection. Now, thinking at my age, I would be better off without taking them, and the neurologist agrees. I have tolerated infusions pretty well. It’s time to make a decision because five months of this with no end in sight versus a more severe infection is not ideal! Every day counts for MS patients."

• Mar...
• Taken for 2 to 5 years
• January 11, 2022

"This was the easiest of the four disease-modifying drugs I tried. After 2 years, I stopped. The fatigue in month 5-6 was just too much for me. I developed snake scale skin on my arms and lost massive amounts of hair."

• FL ...
• Taken for 2 to 5 years
• February 1, 2021

"PPMS 69 yo male. Diagnosed 07/07. Neuro retired 2018. New Dr tried Ampyra. Walking improved in 6 days. No more walker or canes. Better balance and walking. Started Ocrevus 07/19. No long-term side effects. Can’t tell if it is doing anything. Weight gain. Little tiredness. Last infusion 01-27-21. Nothing positive or negative to report."

• Kyl...
• Taken for 6 months to 1 year
• October 30, 2020

"Ocrevus has been amazing for me."

• Rei...
• Taken for 1 to 2 years
• February 5, 2019

"Switched to Ocrevus after becoming JC+ on Tysabri after 6 years. While I don't know the efficacy in terms of disease progression, almost all symptoms have increased in intensity since the change. Tysabri was effective in slowing progression; would switch back if I could."

• Pet...
• Taken for 1 to 2 years
• December 7, 2018

"I have been on Ocrevus for 1.5 years. I just had an infusion three days ago. As with all MS meds, you are never sure if it is doing anything. I have no new lesions and seem to have areas in my legs that I can feel. My hands have not changed. Still numb, and fatigue is the same. Over the 20 years, I have taken Betaseron, Copaxone, and Gilenya. Betaseron was the worst. Copaxone was good. I really am unsure if there has been an improvement by any. I just get worse and pay a lot of money."

• Mic...
• Taken for 1 to 6 months
• June 19, 2025

"First of all, I thought how lucky am I! It was coming out on TV in commercials with Jaime Seglar, so this was awesome! After my first dose, I felt great. It was like my brain was awakened. It was like I didn’t have MS anymore. That great feeling lasted for the next two weeks until I received the other half of my infusion. I still felt good, but I noticed that my lower back and legs were hurting. I’m not talking about just hurting, this was bone pain. Nothing I took-I have pretty strong pain meds-would touch this pain. It lasted for about three weeks. Then one day it was gone. I was so happy for about a month, and then bam, it was back again. That deep bone pain. I couldn’t even walk. I never received any more Ocrevus, and eventually, the pain subsided. I had also lost a lot of hair and even developed skin cancers that are now squamous cell carcinomas. If they could have a drug that makes me feel as good as those first two weeks, I’m in."