Ocrevus a Year After Approval: Views of Some MS Experts

Ocrevus a Year After Approval: Views of Some MS Experts

A year after U.S. regulators approved Genentech’s Ocrevus (ocrelizumab) as the first treatment for both the relapsing and progressive forms of multiple sclerosis, a prominent neurologist involved in the Phase 3 clinical trials that led to its authorization says it has been beneficial for some MS patients.

But it’s simply too early to tell if the infusion therapy is the game changer its developers predicted it could be for the MS population in general, he said.

The neurologist, Dr. Robert Lisak, who is past president of the Consortium of Multiple Sclerosis Centers (CMSC), teaches immunology and biology at Detroit’s Wayne State University School of Medicine.

The U.S. Food and Drug Administration approved Ocrevus on March 28, 2017 — a milestone, considering that MS is now believed to affect nearly one million people in the U.S., according to the CMSC.

“It’s too soon to say anything. We usually look at patients who were followed for two years in the blinded portion [of a trial] and then in open-label extensions,” Lisak told MS News Today in a phone interview.

“Given that, I can say that quite a few patients, in my experience, who were doing poorly on other medications and then switched to ocrelizumab seem to be doing well,” he said. “Among patients who were not doing well with breakthrough attacks or imaging abnormalities, a lot of them seem to have stopped having attacks.”

Hope for PPMS patients

In clinical trials, Ocrevus — which is administered as an intravenous infusion once every six months — slowed MS progression. This has given hope to the thousands who suffer from primary progressive multiple sclerosis (PPMS) and the more common relapsing-remitting (RRMS) form of the disease.

About 15 percent of all MS patients are believed to have PPMS, which in general is more difficult than RRMS to diagnose and treat. People with PPMS also tend to have more difficulty walking, and usually require more assistance with everyday activities.

“We have a huge number of patients that have sort of been waiting in the wings for some therapy for PPMS,” Lisak said. “But one year of progression is very difficult to judge, and to say before two years what’s going on is impossible.”

Lisa
Dr. Robert Lisak (Photo courtesy CMSC)

He added, however, that “you don’t really know how a therapy is doing in an individual patient unless they were doing terribly and are now doing very well, or they’re now doing poorly.

“With in-between patients, it’s difficult to know whether you’re getting a partial response,” he said.

“The patient who seems to be stable may have a mild attack every two or three years, or no new [brain] lesions. In that case, you don’t know what they would have done had you not put them on any new therapy,” Lisak said. “Suppose you had decided to switch them off Rebif. If they do spectacularly well, then Ocrevus has been a big improvement. But if they were doing OK on Rebif or Copaxone, and you then switch them to Ocrevus and they’re still doing the same or a little better, you can’t tell.”

Brain lesions are areas where the myelin sheath that protects nerve cells has deteriorated. It’s a hallmark of MS.

Another group of patients that have done well on Ocrevus are those who were previously doing well with Tysabri, but switched because of concerns with or evidence of JC virus, which can lead to a potentially fatal brain inflammation known as progressive multifocal leukoencephalopathy (PML). Tysabri treatment is known to increase the risk of PML.

Insurance not a major problem 

Lisak said access to the $65,000-a-year Ocrevus varies according to a patient’s insurance company, but most insurers have covered it after other therapies failed.

“The only problem we’ve had occasionally is when a patient has such active disease and such poor indicators that you’d like to put them on Ocrevus or Tysabri right from the beginning,” he said. “We have had a lot of resistance from insurance companies. But as a second- or third-line treatment, when a patient has failed or doesn’t tolerate another drug, we’ve done pretty well.”

“Knock on wood,” was Lisak’s response when asked about safety issues linked to Ocrevus.

“So far, there have been no tumors or opportunistic infections, but it’s only a year,” he said. “You don’t know you’re out of the woods yet. The extension study of ORATORIO and OPERA 1 and 2 have looked reasonably good, but you don’t know what’s going to come five years out.”

The biggest worry, he said, is a possibly heightened risk of breast cancer among women on Ocrevus. In clinical trials, half a percent of patients with relapsing MS and 2.3 percent of PPMS patients developed cancer. Genentech urges women on therapy to undergo routine breast cancer screening based on age and family history of cancer.

“It’s a concern until we see statistics one way or another,” Lisak said, noting that none of the patients on a placebo during the Ocrevus trials developed the disease.

“Unless you think placebo prevents breast cancer, you’ve got to worry about it,” he said. “We have a lot of patients who, when they hear that there’s a risk and they have a family history, they shy away from it. So you’re sort of self-selecting out the patients who might be more likely to get breast cancer.”

Twice-a-year infusions and stability

Lori Mayer is director of medical research at Central Texas Neurology Consultants in Austin.

A registered nurse, she was involved in clinical trials of Ocrevus. She works with Edward Fox, a top neurologist studying MS.

“I think the efficacy data speaks for itself in that what you see in the clinical trials is what we see in real life,” Mayer said. “Many are patients who were on treatments maybe every day — either a pill or an injectable — or maybe a couple of times a week.”

The infusion method of delivery causes some patients to feel as if they’re not doing anything to fight their disease, she said. But Ocrevus is effective for six months.

“Patients have to readjust their mindset that they’re still doing something for their MS, but that they don’t have to think about it for six months. It’s kind of psychological, but it’s a very important component,” Mayer said.

“Every MS patient has his or own variety of symptoms, and these fluctuate from day to day, from morning to night, and from month to month. There’s no continuity of anything.

“What I see with these patients on Ocrevus is that they don’t [have to] deal with this,” she said. “They have more stability, and for them, that makes a significant difference. When patients don’t need to think about their MS on a daily basis, their whole life changes.”

That translates into an improved quality of life for that patient, Mayer said. About 200 of the 1,400 patients being treated at her clinic are receiving Ocrevus.

“The PPMS population is small, compared to RRMS, but those progressive patients that are on Ocrevus are really excited because there hasn’t been a disease-modifying therapy available for them in the past. This is the first FDA-approved treatment for progressive MS.”

She said the four-hour infusion required for Ocrevus is tolerated “really well,” and that its disadvantages are limited.

“There is some concern about breast cancer issues, since so many of our patients are women,” she said, echoing Lisak’s concerns. “That’s where your long-term safety evaluations really come in, and we need to follow them over time.”

Mayer said her clinic recommends that women follow the American College of Obstretricians and Gynecologists’ mammogram advice, and tells patients that vaccines need to be done at least six weeks before an Ocrevus treatment begins.

The CMSC will soon issue specific guidelines to patients considering this therapy, she added.

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68 comments

  1. Old Codger says:

    I was 59 (male) when I was diagnosed with relapsing-remitting MS and began daily injections of Copaxone. A couple of years later, arthritis, bursitis and torn tendons as well as a recently repaired rotator cuff made it impossible for me to inject all the locations the shots had to be rotated too on the various and difficult to reach areas on the body. Luckily for me (now that I’m about to turn 67) I’ve had two infusions with Ocrevus and it has made life more tolerable.

    I live on a ranch in Texas, my wife is a busy partner at a firm one hour away, and my iPhone typically shows me walking 5 to 6 miles per day.

    I seemed to do well on Copaxone but it was impossible to continue with it. My infusions with Ocrevus require us to drive 200 miles into Dallas, have the 4 hour infusion at UT Southwest, then drive home 200 miles (my wife driving of course, but I navigate) and I’m a “happy camper” yet, a decrepit rancher at that.

    • Tom says:

      Hey old Codger, my song is very similar being biagnosed at 59 and treated with Copaxone for a year, then Tysabri then having diagnosis updated from RRMS to PPMS and being put on Ocrevus. After my last physical I was advised to discontinue driving due to my lack of sensation and vertigo so my wife drives me wherever I need to go and my infusions are given in a city about 180 miles away. So hang in their old man you are not alone, we’all just have to keep on keeping on.

    • Heidi says:

      I have my first ocrevus dose Wednesday. I was diagnosed with MS 20 yrs ago at 36. I’ve been treated with copaxone, tysabri, techfidera, and was on Avonex the longest, about 8 years, but I am going into this one feeling more like a Guinea pig than ever before. I keep thinking, I only have MS, why do I want to start a treatment that can cause the development of cancer, sorry, I mean malignant cancers? But, oh well, I guess I’ll give it a shot. Can you please keep us informed on how you’re doing?

      • Janice Garrison says:

        Hi Heidi, I have just been diagnosed with PPMS . I am 63 yrs old and never been sick before this is so hard for me as I am a naturalist not a drug taker of any kind, not even aspirin. I am considering Ocrevus infusion. What has your experience been if you don’t mind sharing? Did you get a second opinion on this before taking this drug? I am thinking about doing that this week. What was it like during the infusion, any reactions? How has this drug made your Ms better? Thank you for taking my questions.

        • Brandy says:

          Following! I am also doing a Holistic approach and I am using Copaxone, and while no side effects the injection is painful.

  2. Forest Trowbridge says:

    My neurologist refuses to prescribe 0crevus for me because, she says, there have been 17 deaths reported in regard the use of the drug, and she isn’t comfortable with being responsible if something that negative happened to me. Can you confirm?

    • Claudia Chamberlain says:

      I can confirm that my doctor told me just recently that there have been several deaths. I did have one round of Occrevus, but my doctor wants to check my B cell levels and wait for the next infusion until my B levels start rising again. I will likely have next infusion at 11 months rather than 6. I had Rituxin before the round of Occrevus and seem to be doing relatively well on it (MS for 28 years). My doctor said that they are watching it closely and that a couple of the deaths were from unrelated causes (car crash)that had to be documented for the study but waiting a little longer for next infusion might also provide more answers about the deaths.

    • Eva says:

      Wow I haven’t seen those reports,definitely something I believe hidden from the public eye! Thank you for sharing!

  3. charles says:

    I was on copaxone since my diagnosis, and I think it was working well for me most of the time. then I fell like I started to get worse, but ocrevus had just been approved. I switched to ocrevus, and now my condition seems far more stable. still looking forward to an actual cure, but for now I am a big fan of ocrevus.

  4. Cheryl says:

    I was diagnosed in 2006. I can only walk using a walker and/or wheelchair. I started on Rebif for 8 years, then went to Tysabri for two years, and then 2016 and 2017 I did Lemtrada, but none of them did any good for me. I’m now thinking about moving to Ocrevus. Does anyone know of anyone going from Lemtrada to Ocrevus? Thanks.

    • Jan Willis says:

      I went from Lemtrada to Ocrevus and I feel better on Ocrevus, less falls and I can walk further and faster, albeit with a walker. Unfortunately my balance hasn’t improved but on the whole I’m happier with Ocrevus than any other dms I’ve had.

    • Barbie Scro says:

      Hi-I was diagnosed in 2006 at 27 years old…I have tried pretty much everything. Betaseron, Avonex, Tysabri, Cyclofosfamide, Rituxan, Copaxone and Lemtrada…I had high hopes for the Lemtrada but had a bad attack one year after the second dose. Epic fail! So my doc just tried me on Ocrevus. I had part two of the first infusion last week. So far-nothing but side effects. Headache from hades one week post, bouts of dizziness (probably low blood pressure apparently), extra fatigue, and my favorite-a constant tingling/stinging/buzzing sensation in my legs. It’s super uncomfortable and I think it’s about to drive me bonkers. I just cannot get comfortable. Anyway-you know how it goes-we patients-especially the women-are whiny hypochondriac crazies! I am SO over this whole thing. I keep fighting because I have an awesome life filled with people I love and work that fulfills me-when I am able to do it. Anyway-re:Lemtrada-all my bloodwork looked as though I had never had the drug. Normal counts all around. So they said I was good to go! I guess we will fond out!! Good luck fellow travelers! May good health and happiness be with you all!!!

      • Danielle says:

        Hi Barbie,
        I just had the second part of my first infusion.. bad headaches, tingling in extremities… when I had nothing before. I wasn’t on anything for last 3 years (I have had ms for 20 years was on avonex but developed antibodies) so hard for m yo rationized yjis being “better”.. can you tell me about your experience with lemtrada? Thanks Danielle

      • Tammy says:

        Hello Barbie,
        Just curious if you’ve had any changes in your symptoms? I just got my bloodwork done and did the paperwork to start Ocrevus, and after reading the reactions you’ve had I’m starting to wonder if it’s a good idea. I am currently on Tysabri which I haven’t had any new lesions on however I am having some increasing side effects that are in relation with a previous bad relapse. My doctor said he thinks it may be a good idea to try this. I am 41yr with 2 very active little kids and just wonder is it worth risking the possible side effects. I will do more research before starting but any input you have as well as anyone else would be greatly appreciated. Thank you in advance. Sending positive healing thoughts your way.

    • GINA FORRESTER says:

      Hey – Did you look into Tecfidera? I have had good results taking it for a little over 5 years, since it came out. I previously had taken Avonex, Rebif and Copaxone and did ok on those but as newer things with less side effects and then no needles came out I went to this. Just a thought.

      • Bk says:

        DONT TAKE TECFIDERA … just my opinion but when I switched from Tysabri 2 to TECFIDERA it did absolutely nothing for me, gotten much much worse. Switched back to Tysabri 2, feel much better again. Just my two cents

  5. Peso13 says:

    I lost my job due to a seizure , so i lost my insurance. So i have been off Techfidera for about 8 months. But now the Doc wants to start me on Ocrevus now that i have insurance. But i just feel my neurologist is not in it for me, im just a another number. I have RRMS about 5 years now, im doing great but what do i do… Thanks

  6. Roberta Sloniker says:

    I was diagnosed with PPMS about 24 years and has slowly gone from square dancing and walking 4 Miles most days to using a walker in the house but needing a wheel chair for anything over 15 or 20 feet. Significant toe drop slows me down even with a walker. My stamina was very low. I had my first Ocrevus infusion November 3rd and in February I noticed my stamina has been improving gradually. I am able to be up and moving around 20 or 30 minutes as opposed to 10 minutes max before Ocrevus. I am very hopeful that I will have more improvement in the future. I am looking forward to my next infusion in May.

  7. Beth says:

    I have SPMS. Would Ocrevus provide any benefit for me? I have experienced slow steady progression over the last 5 – 7 years. I was diagnosed in 1995 with RRMS but was not put on a DMT because my relapses were infrequent and I recovered after each episode almost completely.

    • Wayne says:

      Beth,I was diagnosed the same year as you. I was offered Avonex and decided not to take it because, like you, my relapses were infrequent and I recovered after each episode. In retrospect, a big mistake I believe. I’ve been wheelchair-bound for more than 10 years and my upper extremities are pretty bad already. Sounds like you’ve been luckier than me, but I suggest you take a DMT as soon as possible. And get another doctor.

  8. Steve says:

    Wow,a 25% reduction in disability progression is a”game changer” . One way to think of this is to say that it will now take five years instead of four to reach a wheelchair. Amazing efficacy (tongue firmly planted in cheek) So, the disease marches on at three quarters of its rate. Still, another pointless “me too drug” like all the previous ones with little effect on stopping progression. A rebranded rituximab that has shamefully been allowed to be approved for profit, and far less safe than its analogue. We need stem cells to stop and reverse the course. Period

    • Elle Smith says:

      Well said about rebranding and shameless profit. Only one country allows the more effective rituximab as an MS drug in EU. One has to be “lucky” to have both MS and rheumatoid arthritis to get the treatment elsewhere

    • Wayne says:

      Well said about the marginal effectiveness of virtually all these treatments.They should be fast tracking both stem cell and remylanization therapies!

      • Brigitte Owerko says:

        Yes, I agree. I heard even the MS society may be getting on board with stem cells
        It appears I was misdiagnosed in 1996 as MS. It was likely Lyme that I had to have tested in Germany. Now, after 20 years of immunsuppressants, trying to rebuild my immune system
        Had adipose stem cells but umbilical cells are the best

        • Max says:

          I was told ive had MS for 30 years..im 56 grew up in Ct and moved to a tick infested island..my lyme is off the charts..western blot tshows 3.9 Elisa said negative. Im arguing with my nuerologist as Lyme is as destructive as ms. I have not taken any meds for ms or ppms or spms…the pain from lyme is wicked in my joints as is inflamation.
          Studies should be done…Lyme or ms?

    • Connie J says:

      We need more advocates like you👍🏻
      Diagnosed with PPMS 2016. I will be 57 years old tomorrow. Woohoo.
      I am non medicated because my1st Neuro did not want his patients to begin a medication right after its approval. And at the time there were no other drugs available for PPMS. And obviously I didn’t present sick enough (no walker, cane or falls). 2nd neuro (I switched because a family friend loved her neuro and raved about him) I loved him too! Then after a year of me going back every 3_4 months he kept saying it’s Uhtoff’s Phenomenon 🙄 the the MRI revealed active progression. I was getting increasingly frustrated and that’s when he started pushing Ocrevus. We went round a few times because my concerns were not being honestly addressed. I asked him point blank “how are YOUR PPMS patients doing on Ocrevus? His response… You are my ONLY PPMS patient. Now I’m furious 😡
      You want me to start a medication you only have clinical data on and not seen first hand effectiveness? This blew my mind.
      There has to be a better way🙏🏻

  9. Chris Grace says:

    Can anyone tell me where can I get OCREVUS treatment ?
    I live in Brasil but I can travel to America to get the treatment, wich Hospital preference in Florida.
    thanks for the help

    • Old Codger says:

      I’m very happy with the treatment I’ve received here in the Dallas, Texas area at UT Southwest where I receive my infusions (had one today, I go back on December 28 for my next Ocrevus infusion, which will be number 5) and I’ve had no issues with the infusions. My neurologist is located in the same complex (about 60 acres, a very large place) and switching to Ocrevus has been a great help over the injections of Copxone.

      The reports of MS patients who have died from Ocrevus are highly suspect, and anyone suggesting someone has died from Ocrevus should provide a link to an ethical and REAL news article, because we need hard evidence, not a rumor-mill circulating on the internet about this. I for one, will (and can’t & never) go back to the three times per week Copaxone shots.

      My MS lesions are in my brain and spinal cord. I live on a ranch in a sparsely populated area here in Texas, 200 miles away from UT Southwest (400 miles round trip drive, my wife goes with me, to drive me back after the infusion, but I could have driven myself home today, due to absolutely no issues with Ocrevus). When I got back to our ranch, I even worked outside briefly tending to animals in 101 degree heat and high humidity (I absolutely do NOT recommend any patient do this though) but unless I win the Powerball Lottery and can buy a place in a cooler climate, I just have to stay the course, here in Central Texas.

      I’m confident you can get a flight from Brazil to DFW airport. There is a nice Holiday Inn Hotel near the UT Southwest facility, offering discount rates to medical patients, as well as shuttle bus service to the infusion clinic which is about a ten minute ride. They can come pick you up after your infusion.

      Good luck to you. I hope this information helps.

      • Jane Sprague says:

        Check the research and development history of this drug: too many RA patients died during the clinical trial; then researchers thought it might work for lupus. Nope: same with lupus. People died and/or developed kidney problems. Now they’re aggressively marketing this chemical to MS patients. Researchers and neurologists alike harbor concern over this drug’s efficacy and risk profile. It’s so important to do your homework with all things MS; evidence about ocrelizumab’s history and potential consequences for patients is there in abundance in the NIH database.

      • Perle says:

        I feel your pain. I’m in rural Wyoming, and I fly to St Louis after a 6 hour drive! I’m going to find a new neuro in Salt Lake or Denver, but I like mine :/
        As to the weather…there’s plenty of room for a rancher in Wyoming! 😁

      • Wayne White says:

        Do you realize that when you say “all your lesions are in your brain and spinal cord” that you are basically repeating exactly where MS occurs in EVERYONE. It is a central nervous system disease and comes no where near your peripheral nerves outside the Central Nervous System.

    • Sherri Edell says:

      I live in Florida & see Dr. Jean Raphael Schneider in Clearwater. Best Dr. Everything is handled & they really care about you.
      1-813-855-2900

  10. Wanda Weber says:

    I was diagnosed in 2005. Started with Copaxone, then Rebif for almost 10 years. My neurologist wants to put me on the Ocrevus. I had a couple of brain lesions. Only have right leg pain, numbness, tingling, some fatigue. I was surprised my MRI showed anything, more surprised he wanted to switch my meds. Now I’m nervous and overwhelmed. What is this virus that I have to be tested for and why? If I have it, what do doctors do for you if taking Ocrevus? Will I need to take more mammograms? I hope it works well, I’m willing to try, just scared.

    • Fred says:

      Hey Wanda, You and I both kind of have a similar situation. I was diagnosed in June of 2001 at the age of 21. I was started on Copaxone with my first Dr., Not happy with my short visits I started seeing another Dr. at the University of Pennsylvania and shortly after that she started me on Rebif. I have been on Rebif for most of my therapy and I went back for a follow up yesterday. All of my test are coming back fine, but I mentioned that not only myself, but others are noticing a difference with my walking (Walking with a limp). She suggested that I switch over to Ocrevus. I like many others are skeptical. I am not sure what to do. Part of me wants to switch because “so far” the results have been good compared to Rebif. However, part of me wants to stay on Rebif because I know how to handle it and have not had any side effects that are comparable to that of Ocrevus. I was just wondering, how are you doing so far on Ocrevus and is this something that you would recommend to start asap or wait a little longer to see how it does after being on the market for some time?

  11. Jane Sprague says:

    Check the research and development history of this drug: too many RA patients died during the clinical trial; then researchers thought it might work for lupus. Nope: same with lupus. People died and/or developed kidney problems. Now they’re aggressively marketing this chemical to MS patients. Researchers and neurologists alike harbor concern over this drug’s efficacy and risk profile. It’s so important to do your homework with all things MS; evidence about ocrelizumab’s history and potential consequences for patients is there in abundance in the NIH database.

      • JS says:

        Hi. Just go into the National Institute of Health’s online database and use search terms for ocrelizumab. There are also numerous mostly contentious articles about Ocrevus versus the previous Roche pharma product- rituxumab (?). The researchers kept trying ocrelizumab on different patient groups until the death toll wasn’t too bad. I’m being sarcastic but, that’s the essential logic. Good luck. It’s nasty stuff.

  12. Daryl says:

    I have been on Tysabri for over 11 years and Rebif before that ,I will be taking by 1st Ocrevus treatment in a couple of weeks. Hopefully it works as good for me as some of the others ,we live in southeast Texas and the heat is rough to deal with as well, Praying for good results on it. When I 1st got on Tysabri there were people Dying and it was not suggested to stay on it for longer than 2 years like I said it has been 11 plus but I’m ready for a change.

  13. Margo says:

    I jûmped at the dahance to take Ocrevus because I could not remember to take Tecfidera twice a day despite multiple memory tricks. I was told it had one of the best safety profiles. I just had my third full infusion ( the two initial ones and the two full ones). Each time the time in the infusion center has been close to (for the half infusions) or over 8 hours. Each time I’ve had to be given more steroids etc and have gone home and continued to have symptoms for days. This time was the worst. Plus, my breast exam was a little suspicious, although probably ok. My family history is pretty cancer-free. I LOVE not having to worry about giving myself shots to or taking pills. It is a great sense of freedom, but I am not sure that these side effects are going to allow me to continue. I had the latest infusion on a Thursday and between the drug and the side effects from the counteracting drugs, wasn’t able to get back to work until the following Wednesday. At least they tell me I am very much an anomaly, which is good for the other patients!

    • Teri Wells says:

      I just had my 3rd infusion yesterday (the two half and now full). I am way sicker than I was with the half doses. I threw up several times during the infusion and today have been throwing up and have very little energy. Is this similar to what has been happening for you? Did you get worse with each dose? I am concerned the next infusion will be even worse.

  14. SHANNON M TOMASELLI says:

    This drug makes me really angry, I have primary progressive MS and last year I went on the ocrevus infusion and had the first two doses. By January this year I ended up in the emergency room and ended up in the ICU because I had several major infections which included staph, merca, sepis, sepis E coli in my urine and into a flesh eating virus. I ended up needing 2 emergency surgeries to remove over 10 lb of dying flesh, and being cut open over 70centimeters. I was literally a couple hours from death and almost a heart attack later.I was in the hospital for 14 days in my incisions were left open to heal on their own with a wound vac. This all happened in a matter of 24 hours.Three weeks later I ended up back in the hospital with cellulitis and needed more antibiotics. For the next five months I needed nurses coming into my home almost twice a day to help with my wound care. I seen my Ms Dr a couple months later and he told me I was the 11th person in the world to have such a bad reaction with these this many infections. Still to this day even though I’m not on the ocrevus anymore which I refuse because it almost cost me my life, now I’m also having heart problems, where I never had a heart problem before. For me this was a very dangerous drug and has been reported to the FDA and to the drug company. It has been a very long recovery Road and now I’m left with a lot of damage. I just think people should know and I don’t believe a cure is with infusions and it’s too dangerous.

    • Heidi says:

      OMG!!!! I’m suppose to have my first dose in two days and am very nervous. Having MS almost half my life is bad enough, but now being in fear of a treatment, just seems ridiculous! We suffer enough and now this added stress of horrendous side effects. Im sick of being the Guinea pig for research. Thanks for your truth.

      • Tammy says:

        Hello Heidi
        Just curious how you made out with your first treatment? How bad were your side effects? Just signed my paperwork and got my bloodwork done to change over from Tysabri. I just started researching now and I am a bit scared to even start down this avenue. I really hope things went well for you. Thanks in advance for any insight or opinions you may have. Good luck.

  15. Jennifer says:

    I’ve been on ocrevious for 1 ur and a half an suppose to go get another infusion next week however three months ago I had a crazy ms attack which I never hve known of anyone not knowing what pants were until me I couldn’t understand anything my husband was telling me I was n the hospital for two weeks said it was something I was taking that did it so took me off all my meds and slowly started putting me back on them all but ampreya and Cymbalta and the last one is my infusion I’m scared to get it done bc if it wasn’t one of those two it was this infusion and I’m scared what it could do to me this time

  16. Julie says:

    My sister started ocrevus 3 months ago. She has been in bad shape since then with knee pain, swelling and fatigue. The only thing that seems to help are steroids. Before the first dose she was doing much better. More active and mostly pain free. Dr. said that the pain and swelling are a side affect of the B cells/toxins leaving her system. But it’s been 2 months and she isn’t better. Love this doctor but it doesn’t seem like there is much info about how to improve from these side effects. Dr told my sister to exercise and she is doing light exercise. Have others had this issue and if so, what have you done to alleviate this kind of side effect?

  17. Sammy says:

    San Antonio-based Texan here! 🙂 For what it’s worth, I was a phase II Guinea pig for ocrevus (ocrelizumab) in Phoenix 2009-2011 or so, and I know it saved my life. My neuroimmunologist was/is a research md/phd. Long story short, pain neuro did an mri that scared the radiologist and led the neuro to tell me phx or San Diego would be my next trip. The mri showed ridiculously widespread and large “Christmas lites”. Took a while bc of presentation to get the dx, but yep, rrms, explained all my balance, fatigue, narcoleptic, heat intolerance, and mobility problems. After infusions, I was so much better (no cane) I was treatment-naive for about 5 whole years, it worked that well. So I’ve been so happy it finally got approved. (did my 3rd full dose today, well tolerated again. take the Tylenol they offer!)

    Many drugs being tested at the same place in 2009 didn’t make it. So while no one thing works for everyone, that’s my story about a stupidly-active ms beaten into submission by ocrevus and yes, I use copay assistance. I rarely have a cane day and after 10yrs dx (and a few years of symptoms prior), I’m still working at a university teaching and advising students and started swimming laps last year. Talk to your doctor, your MS nurse, anyone you can, and be a self-advocate with whatever approach you take to your ms. It’s a scary enough disease. No one needs internet fear piled on without a chance to seek some really good info. Luck and health to us all!

  18. Kate Malvasi says:

    Ok, this is scaring the crap out of me. I’m supposed to go for my first infusion in 2 days. I have a cardiac history and family history of breast cancer. I don’t know what to do.

    • JS says:

      Folks, I implore you to look at the clinical trial data for ocrelizumab, aka Ocrevus. As I have said here before, there is a ton of information, available for free at the NIH (National Institute of Health) online database. There you can read the numbers and causes of patient deaths (rheumatoid arthritis clinical trial) and kidney infections-disease for the people with lupus (lupus clinical trial). I am not spreading misinformation as some have ungenerously implied; this is the finalized data from clinical research trials performed by scientists and physicians who determined this drug is just perfect for us with MS. Anyone who is thinking about getting this infusion protocol will benefit by taking a few moments to read the actual science. And then print it out, take it with you to your next mandatory 3 month neurologist checkup and show the data / document to him/her, or their nurse as the case may be and ask: Why do you want me to take this drug, specifically? See what they say, look back at your research and make up your own mind. And I hope everybody feels better, whether you take the leap or not should be up to you- not your doctor.

  19. Pik says:

    Since 2013,had Tecfidera, Gylenia,Plegrity. Started Ocrevus 7/17,1st does lasted 3months,2nd 2months,3rd 5wks. I’m worse now than ever. Cant work,walk with a cane, balance worse. No side effects. Friday get 4th&final dose. Done with this Garbage! 6months is too far in between doses. 55yrs&progressive, i need daily or weekly medicine. Its not working for me, I feel is was all a big hype before was relased.

  20. MT says:

    My son was diagnosed early 2018 and went straight into Ocrevus. Being in Australia helps as it’s covered by Medicare!
    We’ve had no side effects and he’s had no relapses. He still feels the heat and suffers fatigue but so far he’s leading s normal life of a 23 year old male!

  21. Brandy D PerezBra says:

    I was also recommended to have Occrevus since its the safest for women trying to conceive but I’m terrified. The Dr also recommended rituximab. I’m so scared of them all. I was diagnosed in 2017 and I have been in no treatment. Just using supplements like magnesium, vitamin b12, D3, b complex, eating organic. So far, mo relapses whatsoever, but it’s better to be safe than sorry.

    Any recommendations as to what has been the best medicine for when you are trying to get pregnant. Thanks!

  22. Brandy Perez says:

    I’m planning on getting pregnant soon and I am not on any treatment, never been (I was diagnosed with MS in 2017). I have been using supplements to treat myself. Dr recommended Ocrevus or Rituximab to try to keep my MS under control before it get out of control. I was researching and I found better options for pregnancy Copaxone or Tysabri. Any comments on these medications? I am so scared of Ocrevus and the other medicines and damage to a fetus. Any advice is appreciated.

  23. Amanda says:

    The story of how Ocrevus was developed is a shameful one motivated only by greed! I had HSCT a year ago and I am doing great! I am in remission and my EDSS score has gone from 4.0 to 2.5.

  24. George says:

    Don’t waste your time with Ocrevus. I was diagnosed with PPMS 3 years ago. I had 2 Ocrevus infusions with no noticeable improvement – in fact I feel that it made my condition somewhat worse.

    I went to Russia almost 2months ago for the HSCT stem cell therapy treatment. I had to stay in the hospital for 1 month. It was not painful, just a little inconvenient. You get your own rom with bathroom, fridge, table, coffee maker, quite comfortable. The hardest part was the 10 day isolation period, where you can’t leave your room – only nurses and doctors allowed in. You need to keep yourself occupied mentally. Books, laptop computer, drawing paper recommended. I won’t go into the details. It costs $70,000 dollars.

    What I can telly is by the 3rd last day when I went for a walk outside, I was walking almost normally, no foot drop, and it felt wonderful, kind like my old normal walking days. I’m 54 and was still relatively mobile before the treatment.

    Since coming home I feel like something has definitely changed inside me for the better. I go for a walk everyday.

    I couldn’t imagine not being able to walk and day, so for me it was the ONLY option. The treatment is the first step, but you have to exercise and change your diet to help the recovery along. But I know people who were in a wheelchair and are now walking.

    Well worth doing if you want to keep walking.

    Please feel fret email me with questions.

    Regards,
    George

  25. George says:

    Not sure why my 1st comment is not showing

    I did the HSCT treatment 2 months ago in Moscow. Stayed in the hospital 1 month. No pain or discomfort.

    I am walking so much better. Before this I did 2 Ocrevus infusions – no help. Made things worse actually. I have PPMS and am 54.I was still quite mobile before the treatment.

    After the treatment you must exercise and adjust your diet. You have to help the recovery along. Positive thinking and outlets are so important.

    I couldn’t imagine not walking one day, so for me this HSCT treatment was the only option. People who were in wheelchairs are walking now.

    It’s 70,000 dollars but isn’t your walking worth more than that? They have done 1500 treatments – the success rate of this treatment is 85%.

    Feel free to email me with any questions.

    Best,
    George

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