Ocrevus infusion aftermath

Ocrevus infusion aftermath

I had to be honest and let others know in case it happens to you, I haven’t been feeling great since my Ocrevus infusion on Wednesday. I expected the day of the infusion to feel lethargic and tired because of the Benadryl coming through the IV, but I am still feeling that way. It is Friday morning and anyone with MS will understand me when I say my bones feel so heavy. My skin is super sensitive which is definitely steroid related. I just feel, for no better word here, shitty. Now I’ve taken Rituxan, Ocrevus’ close sister for over a year before switching and I did have some side effects because of the steroids. I don’t recall my body feeling this heavy and fatigued before I even did anything. In all honesty with everything going on leading up to this infusion, maybe my body was just run down and that’s why it is reacting this way. I definitely didn’t feel anything like this when I took the first dose of the drug back on August 14. It is just very strange. I decided to break plans with my sister for later on and just relax and rest. Hopefully that will help. The side effects of the steroids should leave my system by tomorrow, I’d expect. From past experience that is what it usually took 3-4 days. As far as this body fatigue, I hope it goes away with the steroids. It wouldn’t surprise me if this whole thing was completely steroid related and has nothing to do with the Ocrevus. I’ll keep you informed. I just wanted this out there for anyone taking Ocrevus for the first time. This way, IF, it happens to you, you’ll know it happened to someone else.

62 thoughts on “Ocrevus infusion aftermath

  1. I had my first Ocrevus infusion in June. After the first infusion, I felt like you’re describing. It lasted about 4 days. I didn’t have the same reaction after the infusion two weeks later. I felt pretty good after it. I’m hoping that when I start getting the full dose in one visit in December that I don’t have any reaction.

    Rest and allow your body to adjust. I hope that you’re feeling better soon!

    1. Thanks. I feel better now. Lasted about 4 days. I guess taking the Rituxan I thought I’d be fine since they are similar. Luckily I don’t have to worry about it again until February.

    2. Are you still on this medication and how has your body adjusted? This is the first time I have entertained the idea of medication, with new lesions I have to do something.

  2. Thank you for talking about the post reactions-I have had the same issues ! Second Infusion in a week-I hope I don’t have the same BUMP-again ! This is the first DMT I have ever had ( I have had MS for 36 years ! ) We’ll see !

  3. Just had my 2nd treatment; the first being in June. I had bouts with nausea & headaches with first treatment, yesterday I had my 2nd treatment so far headache and nausea hasn’t been as bad. I do feel swollen, sluggish and very tired which may be due to steroids. I did feel better about two months after first treatment; more energy and less leg nerve pain. MRI showed no new lesions. I pray that I will do as well this go round!

    1. My next is in February. I didn’t have any side effects from either the drug or the steroid but doesn’t mean I won’t next infusion. I’ve learned not to expect the same feelings. I never felt any better though from the medicine I still continue to worsen. However, I also have no new lesions either. Just more disease progression of my symptoms.

  4. Thank you for sharing your experience. I had my 2nd treatment Wednesday. I knew from my first treatment last July that the steroids would be an uplift to me but last night, Thursday, I was scared. By 10pm I could not walk. My girlfriend had to move my right leg forward because I could not move it. Throughout the night I was chilled and then too hot. I was up 5 time to urinate but could not walk to the toilet so had to use a bucket next to the bed. I normally walk with a cane but I could not stand without help.
    On Wednesday I expected the overall infusion time at the hospital to be 8hrs but I was out sooner than the 300mg treatment in July. Today, Friday I can shuffle walk with my cane and I know I will feel back to “normal” in 2-3 days. I was never told of the side effects like this and people need to be aware of them.

    1. I wasn’t aware either. I thank you for sharing. I was on Rituxan for a while before Ocrevus which is the sister drug. Never had that type of experience however Rituxan was always 1/2 dose two weeks apart. This will be my first full dose.

  5. Thanks to all who have shared their experience. I had my first infusion yesterday and today has been rough. I think it is partially the steroids and partially my body getting used to a DMD. I have never had any infusion before. It helps me feel a little more at ease knowing I am not alone in having these reactions. Best of luck to all.

  6. I have had my first full dose of Ocrevus and Monday its now the following Monday and I still am feeling so awful. It started with a headache, a sharp shooting pain in my left frontal lobe which lasted for 12 hrs. The next day it came and went and finally stopped (sharp pain). However, I have felt like I was hit by a bus all week, fatigue, slight headache and BRAIN FOG..its been awful. 7 days! ugh…

    1. Yeah I hear you. I had a tough time too after my first full dose. What helps is the reminder that you don’t have to do it again for the next 6 months. I hope you feel better soon.

  7. When I had my first full does a year ago, i posted about the ‘hit by a bus’ experience above. I have had 2 since and asked that the infusion rate be decreased so i am there about 7 hours. Another change is a 5 day steroid to taper back to normal.
    I saw my neuro last wed 2/27. no new lesions in cervical or thorasic but mri did show 4 in the brain. Then i had 4th ocrevus last thursday 2/28 and did not have any uncomfortable or unexpected reactions.

    1. That is good to hear about side effects. I’m actually scheduled to take the full dose of Rituxan which is the sister to Ocrevus. Then I’m due for the MRI. I haven’t shown any new lesions in a while yet my disability has continued to worsen ☹️

  8. no new lesions is something I hear from MS’ers which I know is a wonderful report, but Im wondering if that’s the meds? I have had a good report on my MRI for 6 years. In that 6 years Ive been on Gilenya, Tysabri and now Ocrevus….hmm…is it the drugs or would I have a good report without drugs….??

    1. I’ll be honest I’ve had good reports for years to and my MS has continued to get worse so in my opinion the MRI only tells part of the story. That’s what the drugs are supposed to do I guess stop lesions but they don’t stop the course of the disease.

  9. Today was my first full dose of Ocrevus. (Not the dose they divide in half to start.) I felt pretty good compared to starting but the fatigue is horrible today. Thank goodness i took off work i haven’t even made it out of bed yet

    1. I have to be honest I was a little wiped out for a few days. I didn’t feel bad just wiped out. I was able to rest for the days following my infusion so you may need to as well. Drink lots of water too. It helps flush your system. Feel good 💪😊

  10. I had my 2nd full dose on Tuesday and have experienced the heavy legs and fatigue. I stumbled on this site by googling my symptoms. I took off for day of infusion and the following 2 days to get rest and am back at work today. My hands have more numbness and legs feel like I am carrying around concrete slabs on my feet.

  11. Stumbled across this by accident. Not sure if this is still an active group or thread. I’m having my first infusion on Monday (5/18/20). I’m scared.
    I’ve been on six different DMTs in as many years and I’m either allergic to them (Rebif and Tysabri) or they stop working and I develop new lesions (Copaxone, Glatopa, Gilenya, Tecfidera. Please excuse spelling errors.) When the Gilenya stopped working I experienced what at first presented like a stroke. I was in the hospital for 3 weeks (2 in rehab). But it turned out there was a large new brain lesion. Then I almost immediately had an allergic reaction to Tysabri. So as you can probably guess, starting yet another new therapy that has a reputation for being rough the first time around scares me spitless.
    My biggest concern is the reported side effect of respiratory infection. Given all the COVID-19 Stuff, has anyone had an infusion while all that’s been happening? Anyone have respiratory problems?
    Thanks for reading and responding if you’re so moved.
    Be well and safe everyone

    1. You’ll be happy to know I had my last infusion on March 15th at the very start of the virus outbreak. My doctor and I discussed it and felt for me it was the best course of action. I have had no problems with respiratory issues ever on Ocrevus or Rituxan which is a sister to Ocrevus. I have been mostly at home since my infusion trying to be as safe as possible.
      Recently I’ve had some skin issues after the infusion but no infections.
      Hope this helps. Good luck and feel free to ask anything else. I have also been on many of the drugs because I continued to have activity.

      1. Thank you so much for your response! It helped soothe some jitters. I’m glad it’s going relatively smoothly for you. I hope it continues to do so.
        I noticed someone earlier asked about a rise in glucose. Just in case that person is still reading, that could have been the steroids. My first try with high dose steroids during a flare sent me into a diabetic coma. So I’m now stuck on insulin forever bc they trashed my pancreas. If I ever need steroids to get through a flare now, I automatically have to be hospitalized. So I avoid even the lower doses if I can. I’m told that’s not a good idea with Ocrevus, however. Has anyone ever tried it without the steroids?
        Thanks again for your time and for writing about this. So happy I found this blog!

        1. Thank you so much for writing about the steroid and the glucose. I unfortunately have had many many many dosages of steroids. I absolutely hated the downside of steroids but they did get me through a lot of relapses. I do take it before my infusion at 250mg. However for me who used to take 1000 mg a day for four days during a relapse that still is nothing. All of our drugs each come with their own list of pros and cons and you have to see what works best for you. Just like our disease is different and each of us are drugs actually work different for each of us as well. I certainly hope you reach out again I’d love to know how it goes.

        2. I just finished my second infusion 11 days ago so take it for what it’s worth. I believe the good outways the bad by a ton from all the research I have done. They do make you feel rough for a little bit but its manageable. Some people have better/worse results but this is the new generation of medicine and the only one FDA approved for primary progressive ms. Which was huge for me. In my honest opinion I would try it because of all the reading, researching, and calling the company that I have personally done.
          I’m 43 next month and I have been on tecfidera for the last 5 years. My side effects from tecfidera were awful and taking that pill twice a day was a pain.
          I wish you well.

          1. I’m thankful you are doing better with this than tecfidera. Hoping this works for you. Happy almost birthday. Be well. Check in again let me know how your doing. 😊

  12. I am 62, have known about my MS for over 37 years, still am ambulatory. I’m supposed to start my first Ocrevus later in June 2020. I have many lesions on my spine and an additional large one in my brain along w/ the previous brain lesions. I have just begun reading some of the posts about Ocrevus. Should I or shouldn’t I?

    1. I can only answer from my own experience and I’ve had very little issue with Ocrevus or Rituxan (it’s sister). You may be tired for a week or so after the infusion but other than that it uneventful. I don’t get sick often and I feel fine, as much as fine is with MS. My MRi has no activity but I DO continue to get worse despite the drug. I am more secondary MS. I’ve also switched to Rituxan from Ocrevus but they are the same drug. One is a human antibody one isn’t. I’ve written many blogs on the two.

  13. I came across this by pure accident.

    I am 49 and I was diagnosed with MS three years ago. I was taking Tecfidera . However, I was still relapsing whilst on it. Although my MRI came back with no activity, my legs were really heavy, I struggled with my balance and I’ve fallen a few times. My neurologist suggested that I should try Ocrevus. I was a little unsure to start of with, but once I did my research and attended the open day – I felt it was a ‘no brainer.’ I was meant to have my first infusion on 25/3/20. However, due to Covid-19, it was postponed. Now that we are ‘low risk’, I am due to have my first infusion on Friday (31/07/20). Whilst I really want to have it done, I’m slightly apprehensive in case we have a second spike. Is there anyone out there, who is in the same or similar position? I’d really appreciate hearing from you.

    1. I have been on Ocrevus or Rituxan (sister drug) for a few years. I had one of my infusions 3/15/20 right at the start of Covic in the States. Next dosage is September 15.
      I’ve been fine. My B cells remain low even up through the 6th month mark. If my bloodwork was checked on September 14 2020, my lymphocytes would still be minimal in the respected areas.
      I have not had any infection or issues with health. As for Covid I do my best to be safe.

      1. I can relate!
        I was on tecfidera until late January. Supposed to start infusion beginning of April.
        Covid was in full swing and I declined going. I started having the worst m.s. symptoms I have ever had…they began slowly but were not good. I was on a 36 day regiment of steroids! I felt great on the steroids! I started Ocrevus in May and took the second dosage June 6th.
        I felt like I had to go. The place was great.

        1. Other than possibly a week or two after the infusion you really feel fine. As far as symptoms go, I bleed through every MS drug I was on eventually. I am mostly secondary progressive. I’ve also have had MS for 22 years

    2. I just had my first Ocrevus infusion on July, 31, 2020, and it went fairly well. It was the half dose that they start you off with. I had not actual reactions. It went fairly smoothly, but I was REALLY tired during the infusion and that night. The next day I felt okay, but was still tired. Now here I am three days later and still EXTREMELY tired. It is worse than more normal ms fatigue. I woke up this morning with a terrible headache that won’t go away. I’m not sure if that has anything to do with the infusion or not. I hope the fatigue gets better, but so far that has been the worse part for me. I go back on August 14th for the second split dose. I guess we will see how things go from there. I hope your infusion went well and that you are staying safe and well.

      1. I have my first infusion (half) tomorrow. I have been on Aubagio for the past 15 months. I pray for good vibes! I hope everyone has luck with their current treatments 😊

        1. Good evening,

          I’ve had my first half dosis of ocrevus today and I can relate to everyone who is talking about ‘feels like you where hit by a bus’. English is not my native language though so I am sorry when I can not describe the symptons as precise as everyone elae here.
          Whilst beeing sitting at my neurologic doctor and getting the infusion I dosed away several time and afterwards I was extremly tired and still am. My body feels like I was a whole day in a gym but without having the pain afterwards (don’t know the name for this in english) but one is really done for it.

          I was prognosed for primary ms at the beginning of this year and had several givings of 3—5 days of Cortison in 1000mg dosis and I sincerely hope those time will come to an end after all with ocrevus. I have several lesions in my spine ans brain and we’ll see how it is going on for the future.

          As everyone else I wish you all best of luck for the outcomig of this treatment and well beeing.

  14. I’m so glad to read this post…I’m 68 and was diagnosed with MS in 2001…I had my first ocrevus infusion on Sept 5th and my second on Sept 19th of this year after weekly injections all this time…the infusions went okay but am still dealing with fatigue and tingling and heavy feeling legs…has anyone felt this lousy this far out…am also dealing with a urinary information. And you know how MS likes to rare it’s ugly head during an infection…thanks for listening and blessings to all fighting this nasty disease…Jeanne

        1. I had my second infusion June 9th and I still dont feel well. I have some good days but I feel like physically I’m worse. Mentally I feel better than I did on tecfidera. I do have a new baby and my sleep has been disturbed…so maybe that has a lot to do with it.

          1. I’m sorry to hear that. Congratulations on the baby. Sleep deprivation can definitely be a factor. Are you taking any vitamins? Normally I hate that question, yet from experience I have to agree that they do attribute to some energy levels if taken regularly.

          2. Maybe try to add a B12 for some energy. I’m not a doctor so my advice is only from my own experience but I have to admit it does help a little. I also take provigil and have been on that for many many years of having MS. I’ve had MS over 22 years now

  15. I always gave myself one day of rest and recovery after Ocrevus. But I never actually rest then I feel even more worn out. Next time I will force myself to rest for 2 days.

      1. I agree. I honestly feel bad for 12 days is what I noticed after the first 2. I do gradually feel better day to day but after it’s all done I feel bad for 12 to 14 days. The first 3 are not good for me at all.

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