5 MS Patients Across US Talk About How Ocrevus Has Changed Their Lives

5 MS Patients Across US Talk About How Ocrevus Has Changed Their Lives

It’s been a little over a year since U.S. regulators approved Genentech’s Ocrevus (ocrelizumab) as the first treatment for both relapsing and progressive forms of multiple sclerosis (MS) — a disabling neurological disease now believed to affect nearly one million Americans.

While the jury’s still out regarding the therapy’s long-term effectiveness and safety, five MS patients we spoke to across the United States say Ocrevus — an intravenous infusion therapy that carries a retail price of $65,000 a year — has made a dramatic difference in their daily lives.

Here are their stories:

Lorraine Lee

Lorraine Lee is a registered nurse in Austin, Texas. She first spoke to MS News Today a year ago, shortly after receiving Ocrevus for the first time, and two and a half years after first being diagnosed with primary progressive multiple sclerosis. PPMS affects about 15 percent of all MS patients.

Since then, Lee’s had two more Ocrevus infusions six months apart, each one lasting about four hours. All treatments have been covered by her husband’s insurance plan.

“I still see small improvements,” she said. “It’s not as fast as I’d like it to be, but the fact there’s been no more regression is meeting the goal of Ocrevus, and I’m also starting to see small improvements in my mobility.”

Lorraine Lee
Lorraine Lee, who has PPMS, on a visit to Taiwan earlier this year. (Photo courtesy Lorraine Lee)

Lee has already been to Taiwan twice in the past year — accompanying her husband on business trips — and her MS hasn’t seemed to slow her down.

“The first time, I took my walker and used it extensively. The second time I went, I took my walker and never used it,” said Lee, who now reviews medical records for her state’s government.

“When I first wake up in the morning, I feel really stiff and I use my cane. But then I put it to one side and do all my things in the kitchen without it,” she said. “Then I load everything into the walker, which has a basket on it, and load that into my car. I use my walker for toting things back and forth.”

Lee, who now walks up to a mile a day, said she’d rather sit for an Ocrevus infusion twice a year than take any other kind of medicine. “Give me my infusion and get it over with. I’ve never had any side effects, and last time I didn’t even get sleepy,” she said.

“If you’re really in tune with your body, you notice little improvements,” added Lee, who maintains a strictly dairy-free, gluten-free diet, and eats lots of vegetables and protein. “For example, I had gotten to the point, before Ocrevus, where my husband had to fill out all my paperwork because I could not write. And now I’m independent with my writing again.”

Charles Dick

Before he was diagnosed with relapsing-remitting multiple sclerosis (RRMS) some 15 years ago, Charles Dick was a promising graduate student specializing in agricultural genetics. After his diagnosis, he transferred to pharmacy, hoping to develop a cure for MS.

But his condition worsened, and Dick was forced to drop out of school altogether.

“Since my diagnosis, I had been on Copaxone. I also take vitamin D and other supplements, which also help me quite a lot,” he told us by phone from Spokane, Washington.

Charles Dick
Charles Dick of Spokane, Washington, building a wood storage chest. He has RRMS. (Photo courtesy of Charles Dick)

Now 46, Dick said that since his diagnosis he’s occasionally noticed some unsteadiness in his legs, as well as forgetfulness, difficulty concentrating, numbness, and a lack of energy, among other symptoms. After several years on Copaxone, his condition again took a turn for the worse.

“Luckily, Ocrevus had just been approved, so I talked to my doctor about switching,” he said. “Since then, my condition seems far more stable.”

After the first two infusions, he felt a slight tingle in the back of his throat. But Ocrevus, he said, has definitely made him feel more intact.

“My symptoms are gradually getting less severe since I’ve been on it,” Dick said, adding he’s “been doing very well on Ocrevus and have no complaints at all,” excepting that “it’s still not a cure …the gold standard we’re looking for.”

“What I want,” Dick said, “is something to take once — and then no longer have MS.”

Roberta Sloniker

Roberta Sloniker, 74, was diagnosed with PPMS at age 50. She used to wake up at 5 a.m. and walk four miles every day. That helped Sloniker lose 75 pounds — but it didn’t stop her disease from slowly crippling her, until she needed a walker just to get around the house and a wheelchair to move more than 20 feet.

“I’m obviously not very mobile. The whole right side of my body is extremely weak,” said Sloniker, who lives in the Oregon coastal town of Brookings, just north of the California state line. “My right hand is curling, and I can’t straighten it out, so I have very little use of it.”

After a first Ocrevus infusion in November, she said she started feeling better immediately. She called it the first medication in more than 15 years, other than baclofen, that helped to stop cramps.

“I can stay up and do more things, but I just feel better all over. People are telling me they can see that,” she said, explaining she can now be on her feet for up to half an hour, as opposed to 10 minutes at most before Ocrevus. “In fact, I felt really good after the infusion because they give you a steroid, and that really took all the aches and pains away for about two weeks.”

Sloniker will return to a clinic in nearby Medford, Oregon, on May 3 for her next Ocrevus treatment. “I’m excited to get the next infusion,” she said.

Cheryl Sickler

Cheryl Sickler of Deltona, Florida, was diagnosed with optical neuritis in 1996. She also suffered from dizziness, loss of balance and frequent falls. She finally received an MS diagnosis in December 2002, and by 2005, her health was deteriorating rapidly.

“They did an MRI and found over 40 active lesions on my brain,” said the Cincinnati native, who worked on hospital computer systems until MS forced her to quit. “My neurologist told me I’d have full-blown dementia within two years if I didn’t do anything.”

Sickler’s neurologist prescribed a steroid treatment that required her to take 16 pills every six hours, or 192 pills over a three-day period.

Cheryl Sickler
Cheryl Sickler, right, with her daughters Geena, at left, and Claudia. (Photo courtesy of Cheryl Sickler)

“I did that once every four months, but it didn’t help. I had bad side effects and ended up getting a couple rounds of chemotherapy,” she said. “I did that twice and went on a completely raw diet with herbs. After two years, the lesions were finally inactive, but still, none of the drugs were working.”

Sickler tried Rebif, Copaxone and Tysabri, all to no avail. She could no longer hold down her job at UF Health Shands Hospital in Gainesville, and in early 2010 filed for disability.

“I wasn’t able to do much of anything. I was using a walker and a cane, and if I went anywhere at all, I’d have to be pushed around in a wheelchair,” she said.

But things started turning around for Sickler, now 52, after her first infusion of Ocrevus in June 2017, at a clinic in nearby Daytona Beach. A second infusion was given in December.

“It wasn’t long after the first infusion that I didn’t need the wheelchair. Then I got rid of my walker, and maybe three weeks after the second infusion, I was barely using a cane at all, and I haven’t used one for about three months now.”

She added: “I’m just amazed. Ocrevus has been remarkable. Even my cognitive abilities are getting a little better.”

Sickler will receive her third infusion in June. Thanks to her Medicare coverage, she said her only out-of-pocket expense is a $50 per infusion co-pay.

Steven Slobodzian

A former executive for Pepsi-Cola, Steven Slobodzian of Overland Park, Kansas, took early retirement at the age of 58 — one year before he started having health issues.

In 2011, Slobodzian was diagnosed with PPMS, and within a year the disease had progressed so quickly that he soon found himself in a wheelchair. Slobodzian’s doctor put him on Solu-Medrol (methylprednisolone), a steroid to reduce the pain in his legs. But that required his wife to drive him five days in a row, every three months, to Kansas University in nearby Kansas City for his Solu-Medrol infusions.

Slobodzian, now 65, has been confined to a wheelchair for the last six years. When he found out about Ocrevus, he told his doctor he wanted to hold off on Solu-Medrol to give the new therapy a chance.

“Ocrevus basically took care of the pain, but also gives me renewed strength in my legs, like Solu-Medrol used to,” he said, adding that he hasn’t had any side effects from his first infusion.

“I do feel better in general. I seem to have more energy, but not sure if it’s because of Ocrevus or the biotin I’ve been taking,” Slobodzian said. “In all, it’s been a pretty positive experience, and I’m just super glad somebody came out with a drug for PPMS.

“I thought we were the forgotten people.”

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  1. Michelle Cauthorn says:

    I have had my initial round of Ocrevous after being diagnosed in March 2017 and hoping for positive results. It was years of not being officially knowing what was happening to me, to my MRI giving definite proof that I had MS. I really appreciate all of your stories and I am praying for all of your recovery.

    • tom casson says:

      I have had RRMS for 37 years and had my first Infusion in July and if anything, feel that I have gone down hill a bit and truly hope that my improvement will be cumulative.
      I am set for the second Infusion on January 13 and hope I’ll be turning cartwheels, by then!!

    • Roberta Sloniker says:

      Yes David I did consider the risk but I decided to go for it. I was gradually becoming unable to take care of my basic needs. It’s worth the risk and I love gradually doing better rather than worse. I

      • David Hoenshell says:

        MY Name is David Hoenshell and the effects of PPMS on my right side are the same as you described your experiencing. I am going to a MS Specialist this September to see if I can get on Ocrevus because I am getting weaker with less stamina. Hope you continue to improve with your treatment.

    • Cheryl Sickler says:

      Hi David
      I had the risk of PML for the last 8 years being on Tysabri getting the infusion monthly & I was scared at first because one of the risk was death,there was also the risk of cancer.
      So, I considered Ocrevis, having a cancer risk also better than getting PML-JC virus-attacking your brain & causing severe crippling- bed ridden risk or a quick death.
      I learned to be positive with my treatments and not to always focus on the risks.
      Ocrevis has given me back so much that I lost in the first 15 years of my life with MS.

      • Allison says:

        Thank you so much for your honest answer. I was diagnosed 3 years ago after tripping with my foot drop constantly, looks like I have had RRMS for about 20 years and have gradually moved from gaining back to this is the new normal. I currently have the baclofen pump, have been on Tysabri for 14 months and take Ampyra 2x a day. I am in a wheelchair about 95% of my time & moving forward with hand controls in my car. In 4 days I will have my first Ocrevus infusion, I am excited with the hope of regaining something but very cautious since I have gotten my hopes up before-

      • Samantha Battell says:

        Cheryl I used to live in Deltona Fla. Now in st Augustine . I have tried copaxone , betacerone , abugio. I have been off all meds for 6 years now. To many side affects . I am having issues again and thinking of trying this Ocrevus . Nervous I would like to chat if possible .

        • Laura says:

          Give Ocrevus a try it can make a big difference! My brain lesions are now inactive, my energy is better, legs are much stronger. Numbness in my hands almost gone. I do exercise everyday and eat healthy. I take vitamin D3 everyday 6 000 IU.

        • Julie Byerly says:

          I am soon to be switching from Copaxone to Ocrevus. I have done great with Copaxone for twelve years. No side effects whatsoever and very few relapses. The disease is progressing somewhat and my neurologist’s assistant has been trying to get me to switch. After reading these reviews, I may not switch. I prefer no side effects to even possible side effects.

    • LarrybBrewer says:

      We have MS, if it make you feel better, and regain function, I am gambling on getting cancer . To me it’s well worth the risk, I see improvements all over, my body and I just took my first full infusion .

    • Maureen Proper says:

      It is just another death sentence. I am going FOR it. I was diagnosed in 2007 but know it was at least a few years sooner. The first Dr.left the state of Fl. I changed to a Dr. I was getting worse still walking slowly, unsteady,falling. He took me of ms medacation, and all other. Put me on a pill called the walking pill. Turns out that is a pill to take with ms medacation. So i went down fastthat was december 2016 i could walk holding my husbands hand to go to church. Wherever. He referedme to a ms soecialist it was for 8 months away. He told me keep calling they will get you in. Wrong they decided i was a problem. So my husband found me ms specialists and i went 18 monthss with nothing. When he put me on ocrevus. It took 5 months after getting him. I went in a walker, in june 2018 i did ny first infusions and i could feel the medacation squirting in my spine,head legs. I gained some movement but it has no strength. I now am in a wheelchair and can’t do anything. My arms still move and have strength but my legs are not working yet.my brain is covered with legions same with my spine. So this is my only hope, side effects will just have to take there turn.i cant write good anymore. Written for me by my husband Robert Proper.

  2. Chris says:

    It is interesting that an article touting the wonderful effects of Ocrevus are filled with advertisements for Ocrevus. Can this article really be considered objective and unbiased?

    • Cheryl Sickler says:

      Hi Chris,
      I was finally diagnosed with Multiple sclerosis in 2002. I was on many of the MS drugs that didn’t work for me or the last drug I couldn’t take anymore because of testing positive for the JC virus. Ocrevis came out at the same time I had to make a change to another drug and this was the most promising. So, a long with my Neurologist, I decided to switch to Ocrevis and that was the best decision I could have made. It has been 1 year since the FDA approved Ocrevis and it has brought some positive results for those with MS struggling to
      just live relapse free.

    • Nick says:

      I can tell you do not have MS or maybe you have a mild case, without loosing quality of life. These are not advertisements, they are factual accounts of MS suffers who have chosen or been forced to choose Ocrevus, rather than suffer the slow but sure progression towards disability. I have MS (26 years) and Ocrevus is the best and only drug I have received in 26 years.

  3. Pam Tanguay says:

    I am currently on Tysabri and have been for 2 years. I am JCV negative but my antibody total is starting to climb slightly. Once I get to 0.9, I will be switching to Ocrevus. It will be nice to only have to go 2 times a year instead of monthly. Glad to hear about success stories with this drug. Thanks for sharing!

  4. Alistair Bulman says:

    Very interesting article, I have Ppms, diagnosed in 2012 aged 58 having felt ill for 5 or so years.
    I hope that this drug becomes available in the UK I need it

  5. Mary Kowalski says:

    I have received 2 treatments of Ocrevus, third one is due in June, thanks for positive thoughts I hope it will kick in for me too.

    • Betty Fertig says:

      I received my two half doses last summer and my first full dose this past January. I have been ppms for 36 years. After these three doses, I am worse than I ever have been! 🙁

      • Fran mcandrew says:

        My husband isn’t feeling much better either. Same thing did his two back to back and his first several months ago, and his legs are numb and tingling all the time with no relief!
        Hope it gets better for both of you!🙏🙏

      • Briana says:

        I took first two doses in Oct, next one April. I noticed that it wore off in mid Feb and I am worse than before. Did you notice anything like this?

        • Chris says:

          I’ve taken my first two infusions and have 4 months to go before I take the next scheduled infusion. I’ve never felt worse in the almost 20 years that I’ve been diagnosed with MS. I’m trying to remain positive and give this Ocrevus a chance to work.

          • Debby Holt says:

            I’ve had a year of Ocrevus and I am hopefully starting something new by the end of this month. I went downhill horribly for the year I was on Ocrevus and I’d bet I’d be in a wheelchair by December if I continued. My doc says I look great on paper, but my disability progression has been the most it’s ever been in this past year.

        • Rhonda says:

          Yes I am worse than I have been. Next infusion January. Idk about this drug. I have progressed to spms the dr says. I was on Abaugio with no side effects. Now I’m weak can barely walk with a lot of pain. My next infusion is the second one been very depressed. My quality of life has has went down significantly

  6. Laura says:

    I think my husband should take this. He took Lemtrada last August and it helped a little but mostly stopped the progression. It would be nice to have something that reversed some of the progression for him. He is so independent that I hate to see him struggle. We both have MS just different kinds and Tecfidera works good for me.

  7. Carol says:

    Like Alistair, I live in the UK and would like to try Octevus. I’m not going to hold my breath though! Because of the cost of this drug, I will be surprised if NICE give the go ahead to get this drug on the NHS.
    It’s good to read the very positive outcomes from the guys in USA. It gives me hope that Ocrevus may help PPMS.
    Let’s hope the UK authorities at least gives us a chance!

  8. Pam jones says:

    I tried Ocrevus in 2017 but went off because of expense. I’m now on Aubagio and wished i stayed with it. I am SPMS. Can someone share their out of pocket expenses with ocrevus. I am in Medicare (Aetna). Thx.

    • Bridget says:

      I dont know about medicare but if you contact the company they are helping me out. they sent me a debit card that can only be used for infusions. I work full time and have insurance not that I could afford it without their help.

    • Richard Oakey says:

      Curious as to why your doc would prescribe it when it’s only been approved for PPMS and RRMS. I’m sure Aetna would pay if was for RRMS or PPMS.

      • Heidi Schneider says:

        Aetna had denied this drug for me. Been fighting for almost a year. I have RRMS. Had to stop Tysabri because of a positive JCV test result. My neurologist has me on Tecfidera now. He’s considering it as a failed therapy for me but insurance is still denying Ocrevus. Guess they want me to become so disabled that I won’t be able to work and become Medicare’s problem.

        • Kim Mast says:

          Your Dr. Had to prove medical necessity… you’ve tried other dmd’s… you should also contact the company that makes it see if there is a grant that will pay for it!! Good luck too you… hope you’re able to get on it!!

        • Maggie Carter says:

          Not supposed to be able to take Tecfidera if you test positive for the JC Virus but my Neurologist gave it to me anyway…Been on it 3 years now, and I want off of it because I feel I’m still progressing, meaning..I’m worse off than I was 3 years ago when I started this med.

    • Jill says:

      Contact Genentech Access Solutions 866-681-3261 to see if you are eligible for free medication. If your yearly income is under a certain amount, they provide the medication. You have to apply every year, but it is worth the effort.

      • Katie Camidge says:

        I take my first half dose tomorrow morning . I have tried all the other meds with no success and I am very scared of side effects but chose to try

  9. Kathy Dusel says:

    I live in Louisville, Ky, I am 63, and diagnosed with PPMS at age 58. I was receiving Rebif prior to receiving my first Ocrevus infusion, in November 2017. My second infusion is coming up in May. Currently I have not seen results that I am aware of, but looking forward to my second to see hopefully, an outcome. My lifestyle has had a dramatic change. My MS is mostly in my right leg, but fortunately do not have severe symptoms as many do. With that being said, I am a nurse, was in sales/marketing, and chose to resign/retire my position. I was also a runner and physically fit, but of course unable to run, and activity has decreased substantially. I am also fortunate to have a very good physical therapist that has introduced me to a system created to help with walking, gait, and foot drop. It is designed by Bioness, called a L300. I am in the process to see if my insurance will approve. FDA has recently cleared the myBioness mobile app, to improve muscle strength in patients with MS. Good things hopefully will continue coming our way!!!

    • Sara says:

      Hi there! I received my first two Ocrevus infusions Nov/Dec 2017 and my next infusion is this June. I’m 57 diagnosed 32 years ago. Fairly benign symptoms until age 50. My legs are weaker since my first infusion. Did anyone notice improvement after a longer history with Ocrevus? Or rather fewer symptoms?

      • Zahra Rakei says:

        I am 41, 25 years having MS. my right leg is weak and atrophic, but I mostly walk without walker. 10 days after my second ocrevus infusion, I was completely back to normal life.no weakness, no imbalance, and no fatigue at all. I thought MS is finished. my EDSS came down from 6.5 to 4.5. I was good until 10 months, but after 10 months my trigeminal neuralgia which is the most recent leision that I had, relapsed again. now it is 20 days remaining to my next ocrevus infusion. I hope after that I will stop suffering TN.

    • Mike says:

      Kathy, I had to push my claims all the way thru two hearings by the Department of Insurance here in N.C. before Blue Cross agreed to cover my WalkAide. Be ready for a long fight but (in my experience) they will eventually pay.

  10. Joann Kaplan says:

    I’m just curious why none of the people getting the Ocrevus infusions have secondary progressive MS. I understand it says its for people with R&R and PPMS, but my sister is getting the infusions and has secondary progressive. Does anyone with secondary progressive have any feedback on the use of Ocrevus?

    • Elizabeth Schmidt says:

      I saw my neurologist this morning for my SPMS. I asked about going onto Ocrevus and she said that I could have problems with my insurance, as it has only been approved for PPMS.

    • claire tierney says:

      Hi Joann. I have SPMS and have received my first two infusions of Ocrevus. I have had no positive results and actually have seen progression in symptoms. My neurologist says I need to be patient. I am confused and like all of us I hope for a solution.

    • I have SPMS, and took it for the first infusion, which is actually two. Saw really no difference. My Dr. doesn’t trust the database in regards to Ocrevus, as he has read of conflicting outcomes and some deaths, so we decided together that I should discontinue, as my particular disease seems to have plateaued at this time, and to was it until more time has passed.

      • Dr. Elvis Cherry says:

        I started Ocrevus about 8 months ago, I was diagnosed with RRMS about 30 years ago. Was on Betaseron for most of that. Time. Two years ago diagnosed with SPMS with increased Ballance , brain-bleed on a ms legion and cognitive decline. As a professor of Education and Biology this was disabling. I can’t see improvements after only 3 infusions but I’m hopefull. I’m 62 , have Cigna insurance and they pay for the $234,000 for the first year of infusions (not $61,000 per year). Charges were 78k. For each of the three infusions in one year. Good luck all.

    • Susan Lewis says:

      I have secondary progressive MS & have had 3 infusions of Ocrevus. Have seen no improvement in my condition, but I have had MS for 42 yrs.which could make a difference.

  11. R says:

    This is for Cheryl S. in the article, what Medicare plan are you on that only charges $50 per infusion? Are you younger than 65?

  12. charles says:

    I like the article. Very well done. Thank you for using the picture of me working on that storage box. It is a bit goofy, which is a big part of my personality. One thing that I am happy about is all the effort that the MS society is putting into developing a cure. Many thanks to them on that.

  13. Carol Graham says:

    I will have my third Ocrevus infusion next week. Prior to this I’ve taken Avonex, rebif, betaseron and tecfidera and I still saw decline. I was dx with MS 23 years ago at age 30, and I am currently in a wheelchair. I am so hoping this will give me some improvement, but at least a halt to the decline.

    • Lynda Jensen says:

      Hi Carol! Your comment is so very familiar to me. How are you feeling after your 3rd infusion? I truly hope that you’re seeing improvements. I enjoy reading that people are doing better after taking Ocrevus.It gives me hope. Best wishes. ~Lynda Jensen

  14. Amy Riggs says:

    Cheryl S. Hi my Neuro won’t do ocrevus but he referred me to Shands in Jax. I am in Bunnell about 20 miles north of Daytona. I’ve been only on Copaxone since diagnosed. Last MRI showed new small lesions. He said no biggy? Can I ask what Dr. done your infusion? I need a different Neuro. Thanks so much I have spms 7yrs.started with rrms. Really hating MS

    • Cheryl Sickler says:

      Hi R.
      This is Cheryl Sickler, I am on the Florida Sunsaver plan for Medicare. I am younger than 65. I have been disabled since January 2010. My Neurologist contacted Ocrevis to help with the out of pocket cost. They paid what Medicare didn’t pay minus my copay. The Infusion Centers Nurse is the one that works with Ocrevis and Medicare to assure I get the assistance I need. I do not have any secondary insurance plan to pay what Medicare won’t.
      My Medicare HMO plan does pay a large amount even so, I still needed financial assistance. There are other non-profit organizations that have provided assistance in cost with my other Medications I was on previously.
      I hope this helps

    • Cheryl Sickler says:

      Hi Amy,
      I was on capaxone after being on Rebif, and having lots of flare ups, I was switched to capaxone and that is when I ended up with over 40 active lesions—-my MRI looked like a lit up Christmas tree.
      I just wanted tho let you know that is what happened to me when I was on Capaxone.
      To answer your question, I see Dr. Hendrick Dinkla. I have been seeing him since 2009. He is a great doctor; he is in Daytona, close to the new outlet mall.

      • Sarah K. says:

        Thank you so much for sharing your story. I just turned 33 and was diagnosed with RRMS in 2009 with more than 30 lesions on my brain. But, I had practically no symptoms (I was on Rebif, then Copaxone and then Tecfidera for small lesions) until last year when i stopped all medications to try to start a family. My MS attacked aggressively and my neuro said “this isn’t going to end well” unless I start Ocrevus. I’m hopeful but also terrified that it won’t work. Anyways, thank you again for sharing your experience and success with Ocrevus. You’ve given me some reassurance.

        • Kaelin says:

          Hi Sarah, how are things going on Ocrevus?

          I was diagnosed with MS a year ago at a young age and have a number of brain lesions since last year. I was on tecfidera and now my doctor is pushing Ocrevus. Curious to hear your experience.

  15. Scotty says:

    Posting this from Reddit for those outside of the US who cannot get Ocrevus but can get Rituxan, not that I am recommending it, just trying to relieve some of the bias of this article and provide some objectivity. Maybe someone can comment who may not have had such a positive result on Ocrevus so far.

    TreatmentOcrevus vs Rituxan (rituximab) (self.MultipleSclerosis)

    submitted 5 months ago by Kjellvb1979

    Hey all,

    So went to my first checkup post my initial dosing of Rituxan. With my first dosing of Rituxan I had a bout with some pretty rough joint soreness (they felt stiff, achy, and hurt). This lasted about a week at full force, but then slowly got better, and by week 4 or 5 had cleared up completely.
    Anyhow at my apt, my doctor recommended changing to the new version of Rituxan called Ocrevus. Now not being a fan of the FDA’s (imho) overly lax process of testing and fast tracking drugs (I know sometimes it helps get needed meds to market), and to hear the main reason for reformulating the drug was for copyright reasons and not effectiveness just doesn’t sit well with me. Beyond that, I live with pain and a few weeks extra pain is worth it, if it slows down the MS that is. So I’m quite partial to staying on Rituxan given the only side effect was the month of sore joints.

    I’m gonna keep it to that as I’d end up rambling a book. So, anyone on Ocrevus post Rituxan? Please let me know your experience. Any comments or advice welcome!


    Well, if you aren’t getting any immune responses/infusion reactions from rituximab (or they are manageable, like in your case), then I’d probably stick with it.

    It uses the same chemical method of action, is proven to be safe and has been widely used (50% of MS users receiving treatment in Norway use it, for example), and is far, far cheaper than Ocrevus, which means the health care system is saving a tonne of money that could be going to other things (assuming you live in a country where there is universal coverage). Or even if you live in the US and have private coverage, it’s still saving the insurance company money, and therefore helping to keep premiums lower.

    Now, there are arguments to be made, for and against it, compared to other treatments (alemtuzumab, natalizumab, etc), but that’s a separate issue. It seems like a highly effective drug, from trial information.

    Labrat3340M|DX RRMS Nov ’16|Ocrelizumab 5 months ago

    I changed from Rituximab to Ocrevus after 6-months, once it was approved. I tolerated the Rituximab wonderfully (no side effects) and had an incredible symptomatic response (see my comment in the 11/10 Good News Post). The truth is they are really almost the exact same drug. The Ocrevus took the remaining mouse part of the antibody and replaced it with fully human sequences. This should really have no effect other than to perhaps lower the rate of allergic reactions to the drug. I agree that Genentech did this to obtain patent protection on a new drug rather than risk losing money when Rituximab went off patent. That being said, Rituximab was never tested in a large Phase III clinical trial, whereas Ocrevus had its benefits proven in two large Phase III clinical trials. Rituximab and Ocrevus have never been compared head-to-head. And Ocrevus showed benefit in Primary Progressive which was not seen in Rituximab (suggesting that MAYBE there is a difference between the two). Ultimately, the data better supports Ocrevus. What drove my decision was envisioning staying on Rituximab and eventually having my MS relapse. If it relapsed, I wouldn’t feel comfortable switching to Ocrevus since it is so similar to Rituximab. I would not think ocrevus was different enought to rescue a failure of rituximab to work. And then, if the Rituximab had to be abandoned, would I wonder/worry that if I had just gone with the better-data-supported Ocrevus from the beginning, would I have been able to avoid the relapse.

    FYI, I have been dealing with MS for 30+ years now.

    • Bdubs 62 says:

      I was both diagnosed and misdiagnosed (Lyme disease) in 1988, began secondary progressive in 2000 after 12 years of zero symptoms( I did nothing for the disease because I was unaware in had it.) My first episode was optic-neuritis in 1988, and since 2000 my primary symptom has been a deterioration in my legs, which have minimal nerve conduction or function, with my left leg losing function faster than the right. I believe I am a fairly garden variety, typical long term MS sufferer of 30 years and after requiring a cane @2006, walker @2009, I have increasingly required a scooter/wheelchair as I have continued deterioration since then. Since 2000, I have been on probably 6 FDA approved MS drugs and a few off label as well (Avonex, Copaxone,Tysabri, Techfidera. IVIG, Rituxan, FTY-720 and 4AP, which is identical to Ampyra for most, though I don’t get seizures from 4AP and I tend to from Ampyra ) My general belief is most of these drugs are mediocre at best, and my only positive responses (meaning I feel my mobility has improved within 3-6 months of taking them)have been from 4AP and Tysabri, which I took twice, and it only “worked” the first time before the FDA pulled it off the market in the early 2000’s, failing the second time. I believe some patients respond to all these drugs, but most of them are of limited value( if at all) and a good diet is underrated by most MS doctors and sufferers and can generally provide more relief, both quickly and long term than most of these drugs. I just completed my 1st full dose, taken in two haves two weeks apart, last week of OCREVUS and I must say I am(I actually googled “MS symptom reversal” for probably the first time ever)

      really surprised and delighted with how is am feeling. I certainly don’t expect to ever get out of a scooter or chair but my ability to transfer and stand(I can stand with assistance) has notably improved. As mentioned I have been on Rituxan a couple of times previously with no perceptible improvement and I know my neurologist of 19 years who I consider among the best in the world (He is aggressive but I like that) is converting all his Rituxan patients to Ocrevus. I hope this is helpful and best of luck.

  16. Kate says:

    Diagnosed in ‘92. Progressive but not sure if primary or secondary. Have tried copaxone for seven years then switched to Tecfidera. White blood cell count plummeted. Symptoms increased. After first two ocrevus infusions, significant energy boost. But that plus is diminishing now.y last neuro exam showed improvements in strength and flexibikity but y could be due to eating vegan and med pot. I continue in home biking. The way my brain looks I should be in a chair but I’m using just a cane!

  17. Sheila Clark says:

    My husband and I both have MS. I am on Tysabri & he is on Rebif. 16 yrs for me, 6 yrs for him. Asking my Neuro about ocrevus tomorrow.

  18. Azmin Pedraza says:

    I just finished my first treatment. Side effects were minimal and I am relieved I don’t have to get another infusion until November!

  19. Sara says:

    How often is this site looked at by MS people? I wrote, not necessarily a reply, but question regarding Ocrevus. I hope someone sees my earlier reply/\question. I look forward to your reply. Thank you anyone. It was written earlier this morning May 25th 2018

  20. Bernadette Ferri says:

    I had my first two half infusios, my bloodwork came back low count and I was told to hold off my next infusion for 3months. I just had my blood work done on the hopes of getting my next dose in june. Had anyone else had this problem??

  21. Sara says:

    Good morning to all! Think I posted comment wrong place. Anyway wanted to hear from other Ocrevus people. I’m 57 diagnosed RRMS 33 years ago. Have been on Betaseron and Tecfidera. Just started Ocrevus Nov/Dec 2017 second infusion this June. Right before your next infusion, did you feel like old symptoms were showing and you were eager for the infusion? After my Nov/Dec 17 infusion I and friends saw improvement in my walk. Now I feel I’ve slipped back with my walk. Pardon me if I’m rambling but for those of you who have been on Ocrevus longer than me, do you think the closer you are to your next infusion you feel you really want/need that next dose? Like I do now. Thank you in advance to anyone that responds! Sara. SPMS

  22. Lorraine Lee says:

    Dear readers,
    Hi! I am Lorraine interviewed in this article and I would like to share my game plan for fighting MS.

    1. Diet. I would encourage the readers who have MS to read the book The Wahls Protocol written by Dr. Terri Wahls, was also has MS. I found the book extremely helpful. I have changed my diet after reading her book. The first step, eating 9 cups of vegetables and fruits (at least 6 cups of vegetables) was challenging, but after a month I began ever so slightly to feel better. Per Dr. Wahls’ book, I then began a gluten-free and dairy-free diet. My energy is slowly returning and my functional level is improving. I began the diet change in March 2017. Some people say they could never give up bread and cheese, but it is a small price to pay when I have seen significant results.

    2. Stay active. I begin the day with simple stretches for 5 minutes or so. I attend a Pilates class twice a week specifically designed for MS patients. I go to physical therapy once a week. The other days I repeat these exercises at home. I have seen improvements in my physical mobility.

    3. Mental attitude. Optimism is essential. My faith is strong. I have found it is OK to question why, but I don’t allow that to be a roadblock.

    4. Medicine. I have taken 3 doses of Ocrevus. I also take daily vitamins as recommended by Dr. Wahls.

    Is it the Ocrevus or the diet or the exercises or my attitude that is working, or perhaps all four?

    • Susan says:

      I’m curious to know if anyone on this drug has ever tried Low Dose Naltrexone. What I’ve read on it is totally amazing and yet due to it being a very inexpensive to buy ( at compound RX) the big Pharmaceuticals are not going to make any money on an FDA trials for its use in autoimmune diseases and even cancer. Would like to know if there is knowledge of LDN in this community. Thank you!

      • Adrienne says:

        Hello, I am Adrienne and was diagnosed with RRMS 22 years ago. I first was given solumedrol, an infusion of high dose prednisone which helped greatly. I was 40 years old at that time and my lesions were very small and very few.
        Then after awhile I had another relapse mostly with being off balance so my neurologist put me on Copaxone Injections. I stayed on the Copaxone for 12 years and it helped to keep
        my relapses at bay.
        However, about 7 years ago I started feeling weakness in my legs and I had another MRI. There really was only one new small lesion in my brain but 3 new tiny lesions in my spine.
        I then tried tecfidera and Plegridy but the symptoms were not tolerable and I couldn’t stay on either.
        I started doing a lot of research and found low dose naltrexone. I discussed it with my doctor and he said it was fine if I wanted to try it and it really has no side affects. I was on ldn 4.5 mg one pill at night and after about 3 months all of my Ms symptoms were gone! I couldn’t believe it but I got back to running,
        exercising regularly and felt like a new person. Well it lasted for 18 months and then things changed. I started feeling extremely fatigued, so sleepy, off balance again and new I was having a relapse. My doctor now wants me to go on Ocrevus. I am a bit worried because of the possible side affects but I have to do something.
        I pray for everyone who is doing their best to live and cope with MS; it can really bring you down but I have my faith and thus far have been mostly fortunate never having to deal with some of the extreme crippling and pain. My brother was diagnosed 3 years ago with PPMS and has already had two Ocrevus infusions. Nothing better yet but it reads you have to stay on it awhile sometimes before it kicks in. I pray for him everyday as he deals with using a walker, tremors all over, back pain and weakness.

        Well wishes to all as we share our life experiences.

        God bless you

      • KC says:

        I spoke with my Doctor about it and she said there wasn’t a big enough study done to decide one way or another. She suggested when you hear of a new idea for ms go to google scholar and type it in there and it will show you the legitimate studies that have been conducted.

    • Ashley Dill says:

      After a year, how are you doing? I was just diagnosed two months ago with PPMS. I am reading The Wahl Protocol and have changed my diet, am exercising (as much as I can with left leg weakness) and my Neuro has recommended Ocrevus. I’m debating on taking it because of its possible side-effects. Any update you have now that it’s been a year since you wrote this comment would be appreciated!

      • YOLANDA E WOODS says:

        Hi, have you changed your mind about ocrevus. I am real wary about this and told my dr that I wanted to hold off. I was dx’d as spms when I was originally dx’d in 1995, it was switched to ppms as I was not really having relapses just progression. Any way, the comments on side effects, benefits and costs are a lot to think about.

  23. Stephanie W says:

    I was diagnosed in late 2016 and a second opinion in early 2017. In 2015 I was also diagnosed with auto immune hepatitis or inflammation of the liver. Wow 2 auto immune diseases at one time. I had moved from the Rocky Mountains after 51 years to the south for a work assignment. I was on Copaxone originally and it wasn’t helping. I changed Neuro Doctor and I was taken off my 2 meds for the other and Copaxone. I am now going in Friday for my 3rd Ocrevus infusion. I am a sales rep and drive a lot, eat well when I do and I walk a lot. At the beginning I couldn’t walk straight and kept falling so I actually ended up up with a torn meniscus and haven’t fallen since. The only problem with Ocrevus for me is the bathroom issues and possible kidney issues. The humidity in the south doesn’t help so I am trying to get back to Colorado. What has stressed me out more about Ocrevus is being told that $65,000 a year which has never happened since the first one and the second was $124,000. I can’t get an answer why. Sept 3, Blue Cross BS isnt covering infusion at a hospital. I don’t want to switch doctors I have one of the best……but if the cost keeps going up the insurance companies aren’t going to cover it all. Does anybody see the cost of Ocrevus going up?

  24. Michael says:

    Hello fellow warriors,I have had ms since 1999 now spms and hoping that ocrevius dose something to slow the progression and maybe give me some of what I lost back. Good luck to all.

  25. ocrevus…..is a miracle drug from God.. best MS drug on the market..my daughter has had one infusion… and AFTER 2 WEEKS…she wanted to get out and help us mow the yard.. and i said no take it easy..you can’t do that…and now she wants to go on a vacation to disney…..doing laundry, cleaning out closets..her whole life has changed.. she was on tysabri…..for 4 yrs… and it was changing her liver levels..its good to call and say how you doing..and she says great.. want to go out to lunch today?… and now she talking about going to the track and walking everyday.. when the weather cools down… heat is still a factor…. i can’t say enough about this drug.. fantastic..

  26. Fawaz says:

    I’m 28 years old and I was diagnosed with MS in 2013. The best therapy I found especially for the strength of my legs has been swimming. Luckily I found a swimming pool near me that is heated to the perfect temperature of 86F (Not hot nor cold). I highly recommend trying it out if its available to you.

  27. Pik says:

    Since 2013,had Tecfidera, Gylenia,Plegrity. On Ocrevus, 1st does lasted 3months,2nd dose 2months,3rd dose 5wks.I am progressive. Now I can’t work,walk with cane stiff,balance off.Im worse now then ever.No side effects. Get my 4th dose 2/19.Dont even want it.I think its garbage!I can’t go 6months without something. Most medicines are for RRMS,those people do well. Siponimod is in FDA review,that is MY next choice. Tired of what doctor thinks I should take. In all,Ocrevus not working for me,was all big hype before it’s approval.

    • Sarah Longha says:

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  28. Hi everyone,I am 63 yo now dx with ms at 44yo.Started with having RRMS for a good many years,able to keep working and doing what I always did until i progressed to SPMS.I have had the two half infusions of OCREVUS,with no noticeable change,although my copay is 3,800 $ which I am looking for help also. There are a few oganizations that may help.Good luck on finding one that will help.That said I am still searching.

  29. Matt Hunt says:

    Ok I was diagnosed with M.S.in 2013 went from working forty hrs a week to two weeks in hospital determining what I had. Terrible leg craps would last 45 minutes at times kept falling down my doctor put me on Tysabri this has been ok but I have been getting progressively worse first year I was using Cain now I have to use walker. I start ocervus next Wednesday hoping it will help slow down my progressive m.s. To all you that have this disease I got to say never give up I am an advisor outdoorsman and I have made myself a walker on ski’s that I push thru the woods to hunt or to go ice fishing I also heat with wood so I cut wood off of my walker I have learned anything I used to do in a couple of hrs takes all day now. I am only 52 and I am not going to give up A body in motion stays in motion this is what I tell myself everyday. So I have read thru all the comments about everyone’s experiences and I believe there are quite a few of you that have given up. Don’t you have to stay positive. I have lost quite a bit in the last few years I had my dream job used to restore and build classic boats but this dang disease took that away because I can’t crawl into boats anymore ore stand on a cement floor for any length of time. Most days I break out in a sweat because the pain is so bad thru out my body. But you know I don’t give up You know your alive this way it’s better than pushing Daisy’s. So to all that are going to try a new medicine keep a positive attitude and Don’t give up good bless

  30. Stephanie Billings says:

    I had MS symptoms for over 10 years and was finally diagnosed May 2018 and had my first ocrevus infusion in July and had my second one this past January. I’ve had no reactions from the drug and I’ve noticed that it really helps my symptoms the first 8 weeks, but then I gradually go back to where I was. My leg spasms stop, my balance and walking are improved, but then I slow regress again. I’m wondering has this happened to anyone else. I plan on asking my doctor during my next app’t in April.

    • Briana says:

      Yes, I have PPMS, first infusion last Oct, I felt it wear off in mid Feb. Feel worse than before. Having next one April 8. Hope it takes effect soon!

    • Briana says:

      Yes, the same happened to me. It took from Oct til mid Feb when it wore off and I am worse now. Had to wait til next week for next infusion. If it happens again, I will discontinue.

  31. I had my first of two infusions and seemed to have gotten worst. I could not walk hands became numb and developed rash over my entire body.
    I was hospitalized and received 3 1000mg of solu medroe (prednisone). This medicine helped.
    Should I continue this med Ocrevus?

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