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An illustration of an infusion bag hanging with tubes twisting all around it. Four different colors are used to show the different reactions people may have while receiving it.

How Do You Feel After an Infusion?

The other day, someone asked me how I usually feel after an infusion. Because that is a pretty broad question with such a dense answer, I thought I should take a moment to write out my response here on MultipleSclerosis.net. This will allow anyone who’s interested to not only hear a bit about my experiences when it comes to infusions but to also hear from others in the comments below. I believe it’s important for people to hear a variety of answers on a topic like this because it will allow them to see what aspects of my experiences are shared among a larger group of people and which are possibly just unique to me. You know what they say about multiple sclerosis (MS) – everyone is different. I might have experienced things that most others have or have not, or I might not!

The MS infusion treatments I have received

To get things started, I should probably go over a few of the main treatments I have received via infusion (for a little perspective). Like many people living with MS, my first encounter with IV (intravenous) medication was with Solu-Medrol (a corticosteroid similar to prednisone used to reduce inflammation). My first infusible DMT (disease-modifying therapy) for MS was Tysabri (natalizumab), and I was on that for 24 months before I (unfortunately) had to switch to a new treatment. My next IV-administered DMT was Lemtrada (alemtuzumab), which I received two doses of. Last on the list of IV infusion DMTs for MS that I have so far received is my current treatment, Ocrevus (ocrelizumab), which I receive every 5-6 months. I have received many other miscellaneous IV medications, but for the sake of this post’s main point, we’ll just be focusing on the four above.

Different medications have varying effects

In order for me to explain how I feel after an infusion, I have to first explain how I feel during an infusion. It wouldn’t really make much sense to ask a runner how they usually feel after running without knowing how long they had been running for or where they had been running, right? I mean, a 30 minute run around the block is probably going to leave someone feeling a lot different than a 6 hour run on a rocky trail through the desert hills would. That’s why I find the question, “how do you usually feel after an infusion?” kind of broad. It mostly depends on the medication being administered. Not only do different medications leave you feeling differently (obviously), but they also take different lengths of time to infuse. Now, I know that for a lot of you with MS reading this, that may be pretty obvious stuff, but there are a lot of people who have zero experience with infusions, so I think it’s a necessary fact to state.

With all that in mind, let’s look over how the experiences of receiving each of the medications I mentioned above varied so that we can better understand how I felt after each infusion.

Solu-Medrol

Solu-Medrol infusions only took a couple of hours a day for around 3-5 days (depending on the doctor’s orders). Of course, because this was my first experience with infusions, it felt like forever, especially when the Solu-Medrol made me a tad antsy. After I got to go home, I typically felt really irritable, so I didn’t exactly want to be around people. All I wanted to do was eat, eat, eat. Nighttime was the worst part because Solu-Medrol caused me to feel totally wired, which meant insomnia – yay. So, to sum it all up? How did I feel after the last day of a Solu-Medrol infusion? Sleep-deprived and hangry.

Tysabri

Tysabri was much different for me. If I remember correctly, the actual infusion only took about an hour. Once I no longer had to take pre-meds (like Benadryl for possible infusion reactions), it was all pretty routine. In and out. Like getting gas for your car at the gas station. Just a pitstop. I had absolutely no side effects, so I didn’t feel any different afterward than I did before. If you wanted to catch a movie with me when I was finished with my infusion, I was good to go.

Lemtrada

Lemtrada was the polar opposite. However I felt before they stuck that needle in my arm, I felt a thousand times worse afterward. Lemtrada is given for five consecutive days the first year and then three consecutive days a year later. Then, you are done (usually). The idea that I wouldn’t have to go in for a monthly infusion anymore was really appealing, but I didn’t enjoy my experience very much.

I think the infusion itself was about 4 hours, but it felt like I was there all day, which wouldn’t have been as bad if not for the nausea. I’m not sure what most people’s experience was like, but what I mostly remember was being unbelievably tired and horribly nauseous while I was at the infusion center. After I was done for the day? I just wanted to go to bed and sleep as much as I could before the next day of Lemtrada. For weeks after my first five days, I felt like I was experiencing a bit of a flare-up. Worse than that, I felt as though my fatigue had become exponentially worse for months! The second year was hardly any better. Again, not sure about anyone else, but that was my experience.

Ocrevus

My experience with Ocrevus has so far been much closer to my experience with Tysabri. If I’m being honest though, I’m not 100% sure how long the infusion is supposed to take because I usually have to pause it several times for one reason or another. So far, the worst part of it is that about an hour in, I start to experience some minor infusion reactions; primarily, the back of my throat starts itching. So, we stop the infusion, give me a shot of Benadryl, wait 30 minutes for it to kick in, and then resume with the Ocrevus. At this point, the Benadryl usually knocks me out (especially after 50mg of oral Benadryl before the infusion even starts). So, how do I feel after an Ocrevus infusion? Mostly tired from the Benadryl. In my opinion, the Benadryl is hands down the worst part of the infusion. If it weren’t for that, I probably wouldn’t mind catching a movie or going out to dinner afterward.

Everyone is different

So, there you have it: that’s my answer to ‘how I feel after an infusion.’ It’s not a very simple answer, but it wasn’t entirely a simple question. I’m sure there are a wide variety of experiences out there, experiences similar to mine and experiences totally different. I encourage you to share yours in the comments below so that anyone reading this with the hopes of getting an idea of what one of these medications may be like for them will be able to see a larger consensus. I can’t stress this enough: everyone is different, so don’t base your expectations on what just one person has to say.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • rabcab
    2 days ago

    Matt – I am sorry you are having those issues with Ocrevus. I have been taking this DMT for 2 & 1/2 years now and have absoultely NO ISSUES with the drug. What I love the best is not having to take a pill daily and being able to get an infusion every 6 months.

  • Matt Allen G author
    1 day ago

    Yeah, it definitely beat daily pills/injections but I have to stress that FOR ME, the “issues” I have with Ocrevus are really just an inconvenience in my personal opinion. Compared to my past experiences with medication? I really can’t complain, especially since it’s like twice a year!

  • asapcynthia
    2 weeks ago

    When I was diagnosed, it was by an MRI and clinical symptoms by my family practice MD. He put me oral prednisone, and I wasn’t feeling any better. Big story between but then it was Solumedrol. Initially I felt great, but the jitters and insomnia got to me. Then drugs specifically for ms came on the market, so I tried most of them, but back to infusions. Tysabri saved me, at that point I felt like I was circling the drain, as it were. I truly felt ‘better’. The infusions weren’t bad, but being two hours from the ms center, the time spent having the infusion, the observation period, and The MRIs needed for PML was a lot. I was JC+, and made the commitment to my husband I would change at the two year mark. I changed to Glyenia, but mail order kept screwing it up, so the start/stop that became a pattern and I wondered how effective it was, so I stopped it. Then Ocrevus. The first few infusions i had no problem with. I guess I felt better about three months in, but I had one a month ago and I feel ‘better’, which is subjective and means different things to different people, but I felt good enough to get back on the PT horse. I’m too lazy to do it now, but look forward to my essay ‘Core and Other Four Letter words.
    Peace out.

  • Matt Allen G author
    1 week ago

    I usually try to not give too much of an opinion on specific drugs (since everyone is different) but man, Tysabri really was the best. Almost everyone I talk to who is/was on it say it made them feel great! I became JC+ right at the 2-year mark and I fought to stay on it but it seems I developed a neutralizing antibody to it and my health just TANKED. I miss Tysabri… those were the days…

  • mseverchanging
    2 weeks ago

    Matt, had iv infusion for solemedurol at local hospital. One of the staff ran around like a chicken with their head cut off. A hour turned into 4 hours. Give days worth, but they got better. Like they never had done it before.

    Then I had the fun of 17 defusions, known as phlebotomy, where they take blood out of you. Did that at a different hospital that knew what they were doing. Outside link Everchangingms.blogspot.com

  • ksulliva13
    2 weeks ago

    Rituximab. It takes about 3 to 4 hours twice a year. I get very drowsy during because of the Benadryl. Beyond that I have no effects!

  • Matt Allen G author
    1 week ago

    Yep, the Benadryl is the worst part of my Ocrevus, more so than the itchy throat. I’ve tried to bear through it (to avoid the Benadryl) but… it was inevitable haha…

  • ohthenerve
    2 weeks ago

    Thank you for sharing this. I am starting Tysabri soon and am nervous because I had such a bad experience with Avonex that it has made me fear all other drugs. I’ve been on Copaxone for the last 3 years or so, but my new neuro says it’s not effective enough, as shown by a host of newer lesions. Fingers crossed Tysabri works out for me and reduces my number of flare-ups.

  • Matt Allen G author
    1 week ago

    I think you’ll do great, everyone I talk to ends up loving it! Wishing you luck!

  • asapcynthia
    2 weeks ago

    Loved it. Wishing you much success.

  • brewlabs
    2 weeks ago

    Have only ever had Ocrevus as an infusion treatment. First half-treatment I developed some hives – a little Benadryl and it was over. Every other infusion since (5 total) I have had zero side effects during the process.
    The following day I feel a little tired but otherwise normal. So I guess I have been very fortunate.
    Keep fighting the fight everyone!

  • Matt Allen G author
    1 week ago

    So far everyone I’ve talked to about Ocrevus says the same thing. after the first 2 infusions or so, no more side effects. Not sure why but all my Ocrevus infusions are the same, ITCHY THROAT. Oh well, mostly a minor inconvenience I suppose. Glad it’s been smooth for you!

  • Janus Galante moderator
    2 weeks ago

    brewlabs,
    we appreciate you letting the community know about your experience with the Ocrevus infusion treatment.
    It does sound as if you’ve been very fortunate with them.
    Zero side effects during the process is always very good news!
    Thank you for encouraging the community as well! Janus

  • m.Todd
    2 weeks ago

    My experiences with Ocrevus have been fine after the first 1/2 dose infusion, at which I had some delusions. The several Ocrevus infusions since then with no problems. I do fall asleep from the Benadryl, which is ok with me (I get a very nice nap). The infusion usually takes about 3-4 hours.
    At work the next day, I do have people asking if Ocrevus is helping. My answer is always “we have know way of knowing”…

  • Matt Allen G author
    1 week ago

    Yeah, I don’t think people get that it’s a long-term treatment really meant to prevent relapse. You don’t take it and feel all “superhuman” the next day. Like birth control, you take it to prevent something, that’s it.

  • Janus Galante moderator
    2 weeks ago

    Thank you for your input on your experience with Ocrevus, m. Todd. it is greatly appreciated!

  • tom81
    2 weeks ago

    My reaction to a Ocrevus infusion was very disappointing. After my first initial infusion, I became sick for 6 months with a variety of problems. Eyes, lungs, throat, sinus. I stopped further infusions. I had high hopes

  • Sapphire
    3 weeks ago

    I have only had the ‘roids, but they are awful. All the side effects: hot flashes, heart palpitations, eat eat eat, insomnia, the works. Not a fun time.

  • Matt Allen G author
    3 weeks ago

    Yeah, steroids can have some pretty harsh side effects, I’ll have a post that talks about this more out soon

  • JimmyMac
    3 weeks ago

    I saw your article, Matt, at a really good time. I completed my last infusion of Rituxan, or however you want to refer to the medication, yesterday. I always feel I’ve been hit by a truck the day of the infusion then a ton better. I guess it may be to the drug cocktail I’m given before and during my infusion. I am given Benadril and steroids and I’m a fan of neither. After being on Avonnex, Rebif and Copaxone with no positive experience taking an infusion is a great experience for me. (I’m a glass half full guy)

  • Matt Allen G author
    3 weeks ago

    I imagine the pre-meds for Rituxan are similar (if not the same) as the premeds for Ocrevus (since they are pretty much the same) and yeah, the premeds seem to do the most “damage” to me on the day of an infusion.

  • hooversmom50
    3 weeks ago

    I’ve had IVIg and Solu-medrol infusions. With both, I get a slight headache. I do NOT get any other side effect from Solu-medrol. I was on Copaxone, injection, and with that I injected directly out of fridge, which is OK to do, to minimize the itching and welts. I hardly ever had to deal with either. I’m now Active SPMS so I will be starting Mayzent soon. I have the medication but will not start to titrate until after my infusion of Solu-medrol.

  • Matt Allen G author
    3 weeks ago

    Wow, awesome that you don’t really get any side effects, so many people seem to react to steroids at the least. Good luck with Mayzent!

  • SueK
    3 weeks ago

    The description of Tysabri is spot on. No side effects! It was a piece of cake. I felt better than I had in years, going from couch potato to hiking 5 miles a day. Easy schedule, once a month for 1 hour or so. Most of the concerns over PML are highly exaggerated and misconstrued by nervous doctors and patients. The risk is extremely low.

    Lemtrada was a different story. When you are treated with the strongest med for MS you have to expect it is not an easy ride. The infusions of the drug was no problem other than being long and boring. It was the Solumedrol that destroyed me. I was exhausted. After the third infusion I developed Steroid Induced Diabetes which is far more complicated and harder to control than the run of the mill type. This was followed by the Lem Crash which lasts several months, usually beginning three months later. By nine months I began feeling great, only to fall back after round two a year after the first.

    Lemtrada is not a walk in the park. This is serious treatment, formally used to treat Leukemia under the name Campath. If you choose this route be prepared for the measures you must take to avoid falling ill due to reduced immunity.

    Now, a year out from my last dose, my MS symptoms are greatly reduced. Lemtrada gave me my life back. No flares, no new lesions, and much improved over all health. Best of all – no more treatments. My results are consistent with about 70% of patients. Unfortunately, that leaves 30% with lessor benefit and some needing to try another round or Ocrevus to follow up.

    All in all, I wish patients would understand that Solumedrol and steroids are very bad actors. The damage they do may be immediate or show up years later. I avoid them at all cost!

  • Matt Allen G author
    3 weeks ago

    I think I would have to agree regarding Tysabri. I think everyone hyped me up over the PML risk and because Tysabri didn’t seem to be anywhere near as bad as what people were telling me, when those same people warned me about Lemtrada, I assumed it would also be a walk in the park. Yes, Campath (alemtuzumab) was used to treat B cell type Leukemia but it was used at a higher dose for a much longer period of time. I can’t imagine how that would make someone feel! I also typically try my best to avoid steroids, I prefer Acthar, but it’s not very easy to get. I’ll have a post on that coming out soon.

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