Ocrevus and Me, Part 2: Infusion Time and Side Effects

Ocrevus and Me, Part 2: Infusion Time and Side Effects


Editor’s note: This column is second in a series. Read the first part here.

Just you wait! How many times have we heard those words or said them to someone else? I find that now it’s my turn to wait. What I’m waiting for is six months to pass until my next Ocrevus (ocrelizumab) infusion. When that wait is over we should know if ocrelizumab is the right drug for me and if we see a noticeable improvement in my multiple sclerosis (MS). I wrote about my decision to try this newest approved therapy in the column “Ocrevus and Me.”

I’ve recently completed the two IV infusions of Ocrevus, and while I’m waiting, I thought I would share my experience so far and some comments from my neurologist, Aaron L. Boster, MD, OhioHealth Neurological Physicians, about his expectations for this drug.

My worst side effect

Most of us want to know what to expect with a new drug: Will there be side effects? What does the infusion feel like? And much more crosses our minds. I can tell you that my worst problem from having these two doses of Ocrevus, done two weeks apart, was boredom. Yes, I was bored silly while waiting the projected six hours to complete the infusion. Fortunately, I had no reaction to the drug, and my time was actually closer to five hours because we didn’t have to stop at any point and readjust the dosing. Where I get my infusions is similar to an isolation cell with lots of privacy, but includes a television and Wi-Fi access. I sat by myself watching the clock and waiting to be released so I could head home.

It’s important to note that not everyone is fortunate to have no problems with the introduction of ocrelizumab into their body as I experienced.

Infusion time and side effects

During my second infusion appointment, I asked the nurse what types of side effects she saw when people start Ocrevus. According to her, the only one that is consistently showing up is an itching sensation some people have, which appears to be a form of allergic reaction and is treatable. This matches the information gathered in all of the clinical trials for ocrelizumab. She added that the worst is when people get an itch they can’t scratch inside their ear. When a reaction happens, the drip rate for the ocrelizumab is slowed down to allow the body to readjust. We talked about this, and according to the clinical trial experience, about 40 percent of people reported this problem with itching. She said they have seen a slightly lower rate in their clinic. Fortunately, I had no sudden need to scratch a hidden itch.

Why does it take so long? My infusion involved time to do my paperwork and get my IV line placed, a half hour to allow a small dose of prednisone and Benadryl to get into my system, time to get the ocrelizumab infused, and then an hour observation period after it was all done. The ocrelizumab is set to drip at a slower rate and then increased over time if it is well-tolerated and no reaction such as itching occurs.

This all sounds like a chance to take a nice rest and sleep, but every 30 minutes the nurse came in to check on me and to adjust my dosing rate, so there was no opportunity for uninterrupted napping. The only longer stretch of uninterrupted time can be at the end, for the one-hour observation required to be sure there is no delayed reaction to the drug.

Checking with an expert

Afterward, I had the opportunity to talk with Dr. Boster about his thoughts on ocrelizumab.

“By definition, new is exciting, but I think it has to be applied in the real-world settting. I’m not just using what I know from the trials I conducted, but also my 10 years of knowledge with Rituxan, a drug that is very similar,” Boster said. “We can borrow a lot of the Rituxan profile and apply it to ocrelizumab. These experiences with the trials and Rituxan allow me to be comfortable with this treatment. We have lots of evidence about the safety profile of this drug.”

How fast does ocrelizumab work?

I shared with Boster that I have read others’ comments about feeling so much better immediately after receiving Ocrevus and asked what the realistic expectations are to see a difference.

“With relapsing MS I think the curve starts to split at three months, where I feel we could start seeing a noticeable difference. With progressive MS it’s harder to tell in the real world because in the absence of relapse events it is hard to spot a difference,” he said.

Most people with progressive forms of MS do not experience relapses and changes often are very subtle.

“We will do an assessment every six months, which is a natural fit because we have you on a therapy that we give every six months. It is reasonable to do an MRI after the first six months to look for evidence that it is working. Then somewhere between six and 12 months we can look at it clinically to see if it [ocrelizumab] is working. But it is not necessarily this straightforward,” he added.

I asked about reports that people felt better immediately, and he said, “I love that people physically feel better. We have to look for that objective experience [from the patient], as well as the subjective from all of our exams. You know from experience that you can have a drug treatment and almost immediately feel better even if it doesn’t yet change your clinical exam or MRI.”

A game-changer

“I believe that Ocrevus is a game-changer and it resets our expectations for treatment of progressive MS disease states. I think it has potent anti-inflammatory effects,” Boster said. “A truly transformative multiple sclerosis treatment is something that changes the way we approach MS, and I think that this drug fits that description,” he added.

Do I feel better? I actually think I do, and will share examples later. I also know the power of the placebo effect and how powerful that can be, so I want to reserve judgment. For now, I’m content to wait for the next six months to pass and see how I feel when I next engage with Boster, and what evidence he finds during his exams.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

96 comments

  1. Donna Marie says:

    So we are the results, thats the way it has always has to be, good or bad and trial and error! Aren’t there any convicts with MS available to try this on?

    • Laura Kolaczkowski says:

      Actually rituxan, a form of this drug, has been used over twenty years so we aren’t an experiment. How my MS will respond is the big question. -laura

      • Mary McGuiggin, MD with MS says:

        Ocrevus is a humanized chimera and rituxan is an animal human chimera- better from the allergic rxn standpoint.

    • Kirsten Cooper says:

      That just seemed like a really thoughtless thing to say.. Just because someone has made poor choices in life doesn’t constitute using them as our MS experiment dummies. Peace be with you.

      • akhlaw12 says:

        I agree!!! How insensitive. What if u or obe of your family members were in jail? Would u feel the same way then?

  2. Emil Torres says:

    Had first 6 hour infusion of Ocrevus yesterday when should I start seeing the benefits? next one scheduled 7/25 then every 6 months

    • Lisa says:

      Hi

      You’re very lucky that you haven’t experienced chronic daily nausea since your Ocrevus because although the medicine has helped my walking, this stinks. I have my full dose of 380 mg in November. Have to take stuff everyday for this nausea. The Ocrevus has made me feel much stronger

      • Laura Kolaczkowski says:

        That sounds horrible. I’ve not heard of this side effect lasting. I hoe it gets better, soon. -Laura

        • Lauren says:

          Too new. There are differences. My number 1 concern is the cancer scare. Until they can prove that it was not caused by drug. I will stick with Rituxan.

          Taken from the Are Rituxan and Ocrevus similar argument web page:
          IMSMP,(world renowned NYC research center on MS) in its March 31 statement, called the number of cancer-affected patients in the Ocrevus-treated trial groups “alarmingly high” — a stark contrast in wording from Genentech.
          The IMSMP also noted that an early trial of Ocrevus in rheumatoid arthritis was cut short when patients developed life-threatening infections.

      • Mehrdad says:

        Hi,

        My wife’s doctor asked her to take Ocrevus next month for the first time. I’d like to know your opinion after taking this for an extended period of time.

        Thanks

    • Laura Kolaczkowski says:

      I understand it’s a good four months or so to see something that would be apparent on clinical exam. So, we wait… -Laura

    • Kristine Visage says:

      I am slightly concerned that you have the 2nd half of your infusion scheduled just 9 days after the 1st half. To my knowledge, they are to be 2 weeks apart.

  3. Pam Dye says:

    Like you, I just had my second infusion two weeks ago so it is a waiting game. I note any new signifant or minor changes in my condition. Keep a journal so you can follow up with your doctor. I have PPMS so the changes will be subtle. Good luck with your journey and here’s to hoping for positive outcome.

    • Cheryl says:

      Pam, I note that your post is from July 19, 2017. I also have PPMS, but just had my first transfusion June 24, 2018. May I ask how you are feeling now nearly a year later?

  4. Patricia S Knock says:

    My MD said I had to have an active lesions to start the medication! I have had MS since 1990 and just now getting progressively worse.
    Is it true that you have to have an active lesion to start the medication?

    • Laura Kolaczkowski says:

      I have not heard that one …. I do not have active lesions right now and that was not a requirement for me. We know that MS activity happens at multiple layers of the brain and active lesions are just one indicator of progression but don’t tell the whole story. You might either have this conversation again with your neurologist or get a second opinion. -Laura

    • JenE says:

      That is absolutely not true. I have had ms for 12 years and they have never seen an active lesion. An active lesion, I believe, is what is seen during a relapse phase of RRMS. When you’re not relapsed the lesions don’t light up. Ocrevus is the first Med to shoes results for those of us with progressive forms of ms. Progressive ms without relapses isn’t clearly understood but the damage is thought to be occurring by a different mechanism, not inflammation (which lights up on mri)
      I was fortunate and got started on Ocrevus pretty quickly. I had my first rounds six months ago with next dose today. I have had no problems with the infusions except fatigue from the Benadryl they give pre-infusion. Since I have had a couple UTIs which happened to me on Gilenya as well and also a couple of cold sores which I rarely had over the past ten years. As far as improvement? I’m cautiously optimistic because I feel I have more stamina. Also I have had falls/ near falls from disequilibrium. I couldn’t turn around quickly without wobbling and couldn’t safely look side to side while walking. I definitely feel that has improved! If you want to try it maybe consider a second opinion?? Good luck!

      • Mehrdad says:

        Hi,

        My wife’s doctor asked her to take Ocrevus next month. I’d like to know your opinion after taking this for an extended period of time.

        Thanks

    • Mary A Servantes says:

      No way! Your doc must not be an MS Specialist. The goal is to NEVER see an active lesion as well as get some reversal of symptoms. I was on Tysabri for 12 years and my Neuro forced me off b/c I became JCV positive. So it was Ocrevus or lemtrada. I had no infusion reaction today and got one tax return completed for my first infusion. I feel no different than any other day except they give you 100mg of solumedrol and then benedryl so that was a little different on the system. By the end of my observation time I wasn’t mildly tired any longer from the benedryl.

    • Tanya says:

      Patricia,
      I had both my first two infusions without any new lesions, it all depends on your neurologist. I felt great for a while but when it started to wear off my vision decreased and it was getting difficult to walk. I just had my second …ot third dose technically and I am feeling ok but it’s o my been about 3 weeks out. The big problem is that you can get sick much faster and longer then others with better immune systems.

  5. Anita says:

    Diagnosed with PPMS 2 years ago. I am currently not on any DMT. I have some lesions on brain and none on spine. My issues are left leg foot drop, hyperextended knee, balance, fatigue and heat sensitivity. I can do things as I used to just at a slower pace and with rests in between major tasks. My doctor talked to me about this drug. Advised I would need a spinal tap to get insurance approval. I am excited and reluctant to start any type of drug therapy. I wish you all best of luck and hopefully at some point they will find a cure for this disease!

    • Laura Kolaczkowski says:

      I can’t understand why you would need a spinal tap done. I’ve not heard that from anyone – maybe the doctor thinks the tap is needed to prove you really have MS? – Laura

      • Bob says:

        Laura,

        In my experience there are several ways to confirm a DX of MS. Generally you need to have had an attack with in a 3 year period and either a positiive MRI or a positiive spinal tap. Some say if you haven’t had an attack but have a positiive spinal tap and MRI you can get the dx

      • Hope says:

        Hi! Another fellow patient here. Also a medical student who spends an inordinate amount of time studying our disease. Lumbar punctures are usually performed to confirm diagnosis of MS by the presence of oligoclonal bands in the cerebrospinal fluid. These proteins are quantifiable indicators of systemic humoral immune response (AKA they’re proof that your body is attacking itself). Moreover, presence of O-bands in the CSF with absence of them in the blood (serum) indicates that the autoimmune inflammatory response is specifically attacking the myelin in your CNS (rather than non-specifically attacking your whole body, like in cases of lupus or RA). LPs are a lot more commonly used these days to confirm diagnosis of MS, especially when MRI is suggestive, but not definitive. For me, I had T2 periventricular FLAIR hyperintensities present, but it wasn’t enough for my docs to say for sure that I had MS. So, they performed an LP, and I had many O-bands present in my CSF, confirming my diagnosis. For those who have obvious definitive plaques present on MRI, the LP may not be necessary. Hope this helps!

    • Polly Sears says:

      Hi Anita !
      I have had MS for over 35 years, and, have never been on any DMT either. My neurologist is great ( Brigham and Womens MS Clinic ), and, wants the decision to ultimately be mine , after we go over the pros and cons. The breast cancer issue is a major concern. I still walk , altho the past 3 years I do use a cane if going out ( for those darn curbs and cobblestones ! ) His recommendations at this point are Aubagio, or, Ocrevus. I am also a peer support counselor . People that I talk to are very unhappy when taken off Tysabri. Not an option I would take, but , they said they felt totally normal while on it . I just hope we all find the right route while dealing with this strange and unpredictable disease !! Good Luck Every One !!

      • Debra says:

        I miss Brighams! Dr Houtchens was great. I only came off Tysabri on her advise due to JC development & went to another then onto Tec. Ugh. Most recently 1 yr drug vacay living in humid Houston:)
        So now the new drug story starts…Thursday. And Im counting on it. The fatigue is bit much now.

      • Debra Rosario says:

        I just had to stop Aubagio due to high liver enzymes, recent exacerbation (he believed this showed it had stopped working after only 1 year), and lost 3/4 of my hair! Trying Ocrevus in few months after prerequisites.

    • Mary A Servantes says:

      I declined the spinal tap when I was in the dx process and have never had one. If you have brain lesions and MS Signs and symptoms, you have MS. Why do they think you have PP? Did you ever get any DMT that didn’t work? I will say that before I started tysabri 12 years ago I had many of your symptoms as well as terrible vertigo. Ty reversed most for me. Is your doctor an MS Specialist and have you gotten a second opinion? I ask because PPMS has so many treatment restrictions. Have you had a 3 or 5 day course of IV solumedrol to see if that allevited any symptoms?

  6. BRENDA BLAKE says:

    I completed my 2nd infusion June 27, 2017. I have minor itching, less than with Techfidera. I had nausea with Techfidera also. No nausea and less itching is an improvement. Choosing not to doubt this new treatment will keep me from anymore relapses.

  7. merlin says:

    Well we will find out next week hope to see some results but we all have to be patient We MS people know about that 2001 when I got diagnosed and hoping this is the answer.Thanks for your input on this,Merlin

  8. nancy ungar says:

    I have ppms, edss about 7. I had my first dose 5 days ago. The ocrevus produced spasms in my arms and shoulders, and especially in my bladder. They disappeared when the 50mg of benadryl rendered me unconscious. When they woke me up to leave I was too weak to raise a finger. Luckily my aide is strong because lifting me was was like handling lead
    spaghetti. The bladder spasms continued until I took a valium. I have been very weak, tired and thirsty but today I am almost back to my usual weak, low stamina self. FYI, i am often part of the .2% to get side effects.

  9. Irene Berman-Levine says:

    I find the discussion very helpful and thank all for participating. I have RRMS and have done very well for someone who has been diagnosed 16 years ago. I LOVED Tysabri but my viral load is higher than Dr. Jeffrey Greenstein has ever seen (around 3.9 – repeated several times) so he advised changing. At that time I changed to Copaxone as we were waiting for Ocrevus approval. Had MAJOR MAJOR relapse after six months on Copaxone so he put me back on Tysabri. Getting my first infusion of Ocrevus in September and I cannot wait. (doing my six week wash-out now so nothing for six weeks).

    I commute two-hours to Dr. Greenstein in Philadelphia, as he is FABULOUS and has kept me functional for 16 years. However, someone told me I was not going to feel like taking a train, a subway and then a bus to his office. So I hate to waste other people’s time but I will probably take the train there and then family will drive in towards the end to pick me up. Was wondering if anyone else had full energy afterwards that they would have the energy to commute home?

    • Mary A Servantes says:

      I know this was an old post but I didn’t see any responses… I had first dose today and with an extra cup of coffee in me that I nursed for. Couple of hours before I left (I was concerned about the benedryl pre med), I was completely normal driving home in Houston rush hour traffic (meaning it took twice the time).

      • Aruna says:

        Hi I will have first infusion on April 16th 2018 and I’m little scared. After reading your comments feel much better.

        • Cheryl says:

          Aruna, I just had my first infusion two days ago ( 6/29) I have had more questions answered here in this blog in one day then all the questions I have asked in the last couple months while waiting for the first infusion. Not sure about anyone else but the so called’ Nurse Navigators’ are a joke. I have called and left many messages which have never been returned.

  10. Linda Jordan says:

    I had my first round of Ocrevus on 7/14 and 7/28/17. No issued whatever during the infusion process but I was given a 500mg Tylenol along eoth 100mg of Benadryl and the needed cortisone meds. My only symptom so far is fatigue and waking up tired. My leg spasms prior to the 1st infusion were ridiculous. My toes still remain numb but overall I feel better as the infusions seem to have calmed things down a great deal. Still some weakness in my legs but I am now able to walk further and am able to do things for a little longer period of time. My next and full dose is scheduled for 1/26/2018. I’m excited and also anxiously playing the waiting game.

  11. Kelli Sharp says:

    Scheduled for my first OCRE infusion in the morning. Prepared for the worst, hoping for the best. Copaxone injections aren’t working anymore and JC virus is present. I just want to feel normal again. Whatever that means. Seems such a thing of my past, I don’t really remember what normal feels like. This fatigue and grey cloud that hovers over me daily can go away any time now. Wish me luck. 😊

  12. Karen says:

    My cousin is going for her first infusion of Ocrevis today. She is newly diagnosed and this will be the first drug she is trying. It was very helpful reading all of your reviews. My question is, does this drug slow down PMS or just help with the symptoms of this disease? Will she ever be able to function once again on her own?

  13. Paula says:

    I’m very concerned about the infusion reactions that I’m reading about. There have been many going to the ER either f Ron infusion site or hours later. The PML in Germany is concerning as well. I have knowledge that this patient had MRI five days prior to last Tysabri and had two doses of Ocrevus in April 2017 and the MRI in May showed PML. The general public doesn’t have this info…why not? Back to the infusion reactions, my Neuro also stated that a US patient died hours after first Ocrevus infusion. Again patients are owed full transparency when it comes to risks and data from the large numbers seeking this treatment. My info comes from a very high profile MS Specialist.

    • Jared says:

      I think you need to check your sources of information. If someone died in the US from Ocrevus it would have hit the news. Perhaps you are a conspiracy theorist but I don’t buy it. Sort of like the “doctor” and everyone who told me its not MS its chonic Lyme… yea ok… Anyway I had my first round of Ocrevus yesterday and I’m doing just fine. I’m not saying it cant have bad side effects or someone might not die; everyone reacts differently. Just don’t buy everything you hear.

        • Laura Kolaczkowski says:

          AS I understand it, Tysabri users are prone to more infections. Steroids also make a person more prone to infections. When you put the two together, it still adds up to prone to more infections. This doesn’t mean you can’t take steroids while on Tysabri, but the doctor should monitor the person closer for all oportunistic innfections, including PML.

  14. Linda Walker says:

    Had my initial two doses of Ocrevus in July. Now the waiting starts! I’m afraid to admit that I actually an two weeks with no issues. Can that be? Looking forward to 6 month dose to really measure a difference. Trying to stay positive until then… Thanks to everyone that shared their experiences, it really helps. Keep it up–PLEASE!

  15. Lori Gutzmann says:

    Hello, It’s time for me to decide on a med change. I started with Copaxone when I was first diagnosed in 2005. I then changed to a MS study med in 2011. Was doing well with that. however my lung function was getting affected so they decided to take me off of the study. So I look for something that will not have any ref to ill affects to my breathing.
    So, now I have time to do some research on me. what med. trying this out is new for me here at this site. so ty for your time.

  16. Trisha M says:

    I started on Ocrevus 9/25/2017 I have to go back for my second dose on 10/13/2017 i’m really looking forward to seeing some changes around my six month dosage. If anyone else have any advice or stories and feedback I would greatly appreciate it so I would know about what to expect

  17. Margo casey says:

    I had my first dose ocrevus yesterday – easy with benedryl-prednisone. And no side effects. It is really great to read comments – please keep them going. Margo

  18. Patsy Roy says:

    I had my first infusion of Ocrevus 2 weeks ago. I had no side affects. I was suppose to get my second infusion today, but I have several other health problems and decided not to continue the Ocrevus. Is that a dangerous thing to do?

  19. Shauna Abney says:

    Completed my 2nd half dose on September 29, 2017. The nausea, up to this point, has been annoying but tolerable with medication. Today, however, it has been horrible! Dry heaves and stomach pain accompanied it this morning and everything I try to eat makes me even more nauseated! I hope this goes away soon!!!

  20. Donna says:

    I am a rare case. Currently on 44th dosage of Tysabri and am somewhat JCV positive (.38, .42, latest was .21). Being on Tysabri gives me such anxiety, makes me gain weight and makes me so tired. I can’t have steroids (gave me PRES syndrome) so an immunologist decided I would take immunosuppressants with the Ocrevus instead. Was very excited until they arrived and I read they can cause PRES! Now I don’t know what to do. I really want off Tysabri desperately. My doctor got angry that I got a second opinion and has told me to go use the other doctor. He threw a temper tantrum like a 5 year old. He said that more and more patients are ending up in the hospital with breathing problems and even the nurses administering the Ocrevus which makes no sense. The other doctor said he has a couple of patients that take it without steroids without problems. Any advice from the experienced?

  21. Frank Takacs says:

    I’m going in tomorrow at 7am for second treatment no side affects after first half dose just became depressed and tired spent a bunch of time in bed I usually get up early and go Hunting at 5am.i don’t know if its my life falling apart around me or if its from the ocrevus. hopefully this will not be a forever thing I was fired at work lost my fiancé and having trouble staying happy in life.

    • dcgirl53 says:

      Sorry Frank, I had a bad case on depression on Tysabri. I wound up going into my neurologist office and requesting an increase in my anti-depression medication. Within two weeks I was back in the saddle and doing what I needed to do in my life. I knew I was depressed because I just couldn’t pull myself out of bed and do anything. House was a mess, resigned out of the blue from my job without another job. Missed appointments and what not. I take Venlafaxine. Don’t let yourself go untreated. Depression is a real side effect from MS. I just had my first dose of Ocrevus today and all went well.

  22. Kelly Fassino says:

    First dose today! No reaction and the Benadryl knocked me out so I slept mostly. Had 4 month wash out from Tysabri waiting on insurance. Very hopeful! I have extreme fatigue and weakness in left leg and heat sensitivity. I just want my energy back!!

  23. Rebecca Quintana says:

    I had my first dose of Octevus yesterday. I had. Normal reaction of itchiness and burning in my throat. They gave me Benadryl in the midst of my infusion and the side effects went away. I also had a fever and that went awa ay as well I feel great today and can’t wait until I get my next infusion in two weeks!! I have been on Tysabri before and was super upset when I had to discontinue due to being positive with the JCV virus. I M going to be positive this drug will work!

  24. diana keenan says:

    I read through all of your questions and answers “thank you” for that. I have had MS since 1998 and was referred to Providence MS Center because my MS in my brain has doubled with lesions from 2013 to now. I have been approved for this new drug, went through all the tests and OK to go. I am not a person who gets scared but I am still having trouble deciding to start this drug. People mention cancer being a scare but I have seen very little about this in my information. I think I am going to try it because I am 61 now and feel I have nothing to lose with how I have progressed what is the alternative but to get worse right?

  25. Lady Bug says:

    I was scheduled and ready to go and start my first infusion of ocrevus.
    Then the doctor called and said that 4 people have died in the last 30 days within 48 hours of their first ocrevus infusion.
    Does anyone have any further information?
    Please help

  26. Cheri Mores says:

    I was diagnosed with MS on October 12th. I will start my 1st infusion of Ocrevus on December 19th. How long until you start to feel better? I am exhausted now…will it get worse?

  27. Dcgirl53 says:

    I had my first dose of Ocrevus yesterday. It went well, I had itching so they stopped it for about 20 minutes and then restarted with no issues. I haven’t felt this good in years. I woke up feeling amazing. It’s almost to good to be true I switched from Tysabri. My walking had progressed to a horrible state while on Tysabri. I am/was using a rollator. I haven’t needed this morning. Fingers crossed this keeps working!

  28. Lynn L says:

    I am waiting to get set up with Ocrevus at our local infusion center. I have been on every MS Medication, besides Tysabri, my doctor said I was a risk for this medication. I am unable to have any steroids as I react severely to them. I also tend to be that patient that has the rarest side effect from medication. Has anyone received the Ocrevus without the steroids? Just wondering if there was an increase of side affects. I will take the Benedryl, however I am on Allegra already for a skin issue that I have. I hope this works to alleviate my extreme fatigue, and weakness in my arm & leg.

  29. Peggy Wade says:

    I WILL get my third treatment in April
    The only side effects I get is itching I take benadryl that is the only side effect that I have had.

  30. Chuck spong says:

    Had my first infusion of ocrevus yesterday. Tired after pre-med but slept well. Going to the gym today.ms for 12 years and I’ve gone through the changes of med along the way. 6 years rebif,1 year tysabri, 4 years giLena and been clean for 1 year in anticipation of ocrevus. I’m excited. I’m hoping for improvement at whatever level.

  31. Sarah says:

    Thanks for all the transparency in your posts! I have had Ms for 6 years. Started on Avonex for 11/2yrs then switched to for 41/2 I tested poitive for JC virus 2 years ago and was pressures by dr to switch for a few years. Bbut resisted Gelinya and “waited” for this new infusion drug.I cut down to 8 week infusions,lowered my jc but started having new symptoms so went back to every 4 wks Oct.2017 wile waiting for Ocrevous approval.in January when they tried to access my port it wasnt working properly. I went for a dye test and after ten attempts ( no kidding) to acesss they saw on xray machine it “flipped”. I had it removed and opted not to replace since Ocrevous is only every 6 months.
    I got my first infusion of Ocrevous yesterday. Concerned that i went from Tysabri / Ocrevous with no “wash out period” like some have referred to. I took premeds/steriods before. I didnt have to stop at any time. I started itching right after they stopped my drip. Was given more Benadryl in my iv. Man that stuff knocked me off my socks! Could hardly muster energy to walk/ function and take care of my family for next 6 hours. Then got my second wind.Just woke up all itchy again 12 hrs later. Took 50mg of Benadryl.
    After reading some of these posts I am concerned about the risk of breast cancer (1st iv heard) and always fearful of pml. I feel a real discount in my health treatment since i drive three hours to nearest MS clinic in Denver and then have infusions in my hometown. Yes i got the. Info pack but no one has gone over these “life treatening” side effects. I am only 35 and do not want my family to loose anymore than what MS has stolen! I have my next dose in two weeks. I have to keep my faith in Lord that this will all work out!

  32. You really make it appear really easy with your presentation but I to find this matter to be really one thing which I believe I would never understand. It kind of feels too complex and very large for me. I am having a look ahead to your next post, I’ll try to get the hold of it!

  33. Judy says:

    I am waiting to hear from those getting the second round (full dose) now that most of us had the initial 2 doses at least six months ago.
    Where are those comments? I’m due for round 2 in April and would like to hear how the full dose at once is tolerated.

  34. Dusty Rhodes says:

    I’ll jump in. I am on Tecfidera now, having been on Tysabri. I shared the same med Tysabri and neurologist with someone else. That person contracted PML and survived. I contact the drug company and inquired, they said no one had contracted PML. A few days later the drug company called and wanted the name. I told them HIPAA laws did not allow me to disclose this.

    It was never in the news. The person that contracted PML has been devastated by the disease.

    I appreciate everyone’s comments I am JC virus positive with a high index and my white count is below .5 so I will most likely be going to the this med.

    I am new to the St Louis MO area. If you live in this area and have a neurologist you use and like them please reply with their name. Thank you

  35. Michelle Schroll says:

    Hi, everyone. I just wanted to pass along my experience. I had my first 300mg dose of Ocrevus yesterday morning. I did have some discomfort in my throat. They slowed the drip down for approx 30 min and it went away. Bumped the drip back up and all was fine. I left the hospital feeling fantastic; a little sleepy from the Benadryl, but nothing major. I woke up this morning feeling fantastic!! I am sure it is the steroids…or maybe not, but the pain in my feet is probably 90% better and my hands as well. I am extremely excited about this new drug and feel it is a real game changer with we MSers. I cannot wait for my second dose and then my first full dose.

    I am hearing incredible stories from people and praying I, and everyone else, will have the same outcome with this drug.

    I am super excited at the chance of just feeling normal again.

    God bless you all!!
    Michelle

  36. Kyle Curtis says:

    I’m due for my second treatment this Friday. I haven’t noticed any big changes, but I do feel better. Anything is better than how I felt before. I think I might be depressed, but never been before so I don’t know. That’s what my neurologist thinks. Just have to keep moving. I’m excited at possibly getting back or close to who I use to be.

  37. George says:

    My name is George and I ppms. My first signs was when I had my daughter and my wiener died lol of all things! I just got the approval for a penile implant and my wife and I can’t wait. I’m only 32 and refuse to be a 30 year old virgin !

  38. Rachael says:

    I have ppms had my 2nd, full dose, ocrebus infusion 2 months ago. My reactions were so bad that that this post seems like a paid advertisement. It’s nearly 8 weeks out and I’ve been on 4 rounds on prednisone, 1.round of prednisolone, and 2 1000 unit IV corticosteroid! All to treat my reactions. I’ve now met 5 others with ppms that are responding almost exactly the same as me. The joint pain is unreal, burning in my hands and feet. ALL of my mucosal membranes burned and peeled over and over! Resulting in bloody noses and severe pain and discomfort. I break out in hives and rashes over and over. And let me tell you about that itch most people have, its everywhere! In your ears, back of your throat, between your fingers and toes, the tip of your nose. You cannot get away from it and its overwhelming! The fatigue, on top of the already diagnosed chronic fatigue, leaves you literally bedridden. I’ve developed ulcers and am now on meds for that. I have corticosteroid creams for my skin reactions. They had to change my asthma meds to accommodate the bronchial issues I now have. This drug is no joke! And my doctor just says we dont know what will happen with the 3rd infusion, it could get better. How about no! Of the 5 people I’ve met with the same reactions, 2 are not longer walking!!! I’m not willing to sacrifice my mobility for a maybe. I’d rather have no meds at all, than ones that are trying to kill me. – Rachael

    • Lizeth says:

      My mom’s pain and fatigue have been at their worst. 1st full infusion was April 6th and no improvement in sight. She has SPMS… may not get that 2nd full dose… =/

  39. Rona says:

    I’m happy to say it’s made a huge difference in my life. The most active of side effects for me has been my diminished strength in my legs. My knees seem to buckle as soon as I take 2 steps. I use a walker around the house to avoid falling. I fell a few times due to an increased foot drop after O. If anyone else feels this or have a solution, I would much appreciate it.

    • Rona says:

      I started physio therapy, I was told that she’ll be able to get me comfortable using my cane only, and I asked if she could help me walk with no assistance? She said: “ we’ll see”. 🤞 Good luck to all. Stay 💪❤️ We all got this!

  40. Steven F. Correll says:

    I had my 6 month Ocrevus infusion (full dose) last week. The infusion went well and there were no reactions during the process. I have been slightly more tired than usual but that has grown less with each passing day. I was diagnosed with RRMS 20 years ago at age 38. I began daily Copaxone injections and my relapses were held in check. However, I have transitioned to secondary progressive MS and my walking has declined significantly. My MRI results show me to be “clinically stable.” And yet my walking declines. My most successful tool for combating the effects of the disease has been regular exercise and a healthy diet. My goal with Ocrevus is to slow disease progression as much as possible. Too soon to tell for now.

  41. Theresa Peterson says:

    I had my 1st Ocrevus infusion Monday. I did have some pain in my throat and then my ear itched horribly as well I did get hives here and there which quickly went away after the infusion was over. I think the steroid kept me awake for most of the night Monday,but I also have huge stressors in my life. I did get good sleep last night, but now I have nausea and stomach discomfort, I hope this goes away soon.

    • Cheryl says:

      Theresa, you are the first person to mention being awake all the following night, just like what I had happen to me! I just had my 1st. half infusion on 6/26/18. It is nice to be able to read and find someone else who is experiencing part of what you are!

  42. Kelley says:

    Has anyone else experienced worsened heat sensitivity since taking this drug. Heat sensitivity has always been an issue for me but since starting this drug it’s gotten alarmingly worse.

    • Cheryl says:

      Kelley, honestly I was bothered by the heat sensitivity terribly. That never ending hot-flash type until about 2-3 weeks before my 1st. infusion. I don’t know if we are suppose to say this or if anyone else has even done this but I have been using topically some essential oils ( Frankincense and Helichrysum) and whether it is coincedence, mind over matter, or just because I want something to work badly enough, but the heat sensitivity has been way better and now I am hoping it improves even more.

  43. akhlaw12 says:

    I was diagnosed with MS (RRMS) in June 2005. I’ve gone from being in a wheelchair for 3 years and having to go on Social Security disability to walking without any assistive devices and working full time again. I’ve been on Copaxone (too many skin reactions and i hated the daily injections) to Avonex (I hated having the flu ALL weekend for TWO years) to trying Ocrevus. My 1st 1/2 dose was June 29th. I had some itching, nausea and fatigue. I took more Benadryl and was sleepy for two days. My 2nd 1/2 dose was July 13th. I had some itching, fatigue, diarrhea, nausea,leg tremors and leg weakness. I have no appetite and every time I think of getting up, my mind and body says “please, just stay down lady!” I took Ocrevus to see if it could help with my main debilitating MS symptoms (fatigue, cognitive issues, and pain). I’m in between deciding whether to keep working or retire on disability (but I’m only 48 yrs old). **If anyone has been in THAT dilemma before, tell me how u made the decision.** My functioning capacity test says I should not be working but it’s such a delicate issue for me because I’m SUPER independent so i would rather work (but i also want to FEEL better while working). I guess I’ll see if Ocrevus helps me and THEN make a decision on the working vs not working issue soon. GREAT health to everyone!!

    • Patti says:

      You will positively know when you can no longer work. I worked as long as I could. Then one day it just came to me that I had to retire early. Now I do not regret retiring earlier. Listen to your body.

  44. Jacqueline Farquharson says:

    I’m going for my first half dose of Ocrevus on 7/23/18 (2nd half dose scheduled for 8/3/18 because I can’t do it on 8/6/18). I’m hopeful that it will be my “miracle” drug. I NEVER want to have the MS hug again or to experience the MS FOG again. I’ve only been diagnosed since 6/12/17 and Copaxone wasn’t working as designed because I keep getting new symptoms. Wish me luck! I’m wishing good things for everyone.

  45. Megan Stokes says:

    I am scheduled for my 1st round of Ocrevus infusion on Sept 13,2018. After reading all of these stories I am seriously reconsidering the decision to go from 40 mg shots of Copaxone to 6 mo infusions of Ocrevus.

    • Dorothy says:

      My doctor wants me to go on Ocrevus. I am presently on Compaxon 3times a week. I am not sure i should change. I am confliceted. I hae RRMS for 10/2005. Has anyone useed the oral medication. I am scared to go on Ocrevus.
      Any help would be appreiated.

    • Mary says:

      Megan, I went from 40 mg of Copaxone to infusions of Ocrevus. Copaxone worked pretty well for me, though after three years, my MRI indicated disease progress. I saw new research which evidenced that more powerful protection of the brain, early in the disease produced better outcomes long term, and so when my doctor recommended Ocrevus, I was eager to try it. My first dose was on July 27 and my second dose was August 10. I had a mild itchiness reaction on my arms during the first infusion, but no reaction to the second. My only side effect in the past three weeks has been increased thirst. I wouldn’t tell you that you certainly should switch medications, but that I just did what you are considering. Here is an address to link to that research:
      https://www.mscenter.org/education/seminars-workshops/presentations

      The sixth video from the top is an explanation of why it’s important to reduce inflammation immediately.

  46. Veronica says:

    Hi I am wondering if anyone has experienced severe cramps in there calves after receiving Ovrevus? My friend has MS and it appears that after the second round of Ocrevus she suffers from debilitating cramps in her calves. Her doctor wants to refer her to a pain management clinic and that concerns me.

  47. Khadijatu Lindsay says:

    I had my first half dose of ocrevus 8/6 and finished my second half of the first dose on 8/20. I feel weaker than before I started the medicine. I have been experiencing inner ear, throat and sharp head pains but on my left side. My throat feels dry and sore. Mainly at night when I’m trying to sleep. I know it is still early but these are my experiences. I’m hopeful that things will begin to get better for me within these 6 months as I wait to have my 2nd dose. My suggestion is for you all to keep a positive attitude, stay prayed up and change your diet to a plant based one. Be blessed!

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