Above is a pic of Finley, my MS Adventure Buddy, with me at my very first Ocrevus Infusion on 11/6/24!! Apparently having 3 mild, itching infusion reactions frazzled the nurses. 😅🤔
They didn't tell me that having just 3 mild infusion reactions (of just mild itching) was an issue (glad I didn't tell them I had 2 more when I got home! - all ended with meds!). But when I went to my neuro appointment on Friday the 8th, I was told I would not be having my next Ocrevus infusion, and she tried to put me on an much older DMT, daily pill, which would not work, because of my malabsorption issues. I told her that I probably had the itching issues because they started me on oral Benadryl, and again, I have malabsorption issues, so it probably didn't work very well, and that was why it took a while for each of the oral meds to work on stopping the itching during the infusion... and she had forgotten all about it, so it messed up their ability to stop the reactions, because what had been ordered for me was all oral meds. I was so upset when I found this out!
But, today, joy of joys!! After sending her another message on the portal, being insistent about changing the beginning meds to IV and not oral, etc, she finally reached out to the infusion center, and they will do the infusion as scheduled! With the IV meds instead of oral. I'm elated! I was so worried I'd have to go for a long while without a full dose of a DMT, while we argued about what to start in it's place. She was trying to bully me into a DMT I did not want to do. Absolutely not. 🤨
Thankfully, my paperwork is in the works to go to the Shepherd MS Institute in Atlanta. It is quite a haul to get there for me, and I had no clue it would take so much to get into the place! They get all your medical records and then review them to make sure you meet their criteria to be seen there. I'm on week 4 waiting to see if I can make an appointment (not including the time it took me to fill out all the paperwork!). I talked to the intake person yesterday, it usually doesn't take quite this long, but she was on vacation, she is a lovely person. My stuff has gone through the first review, and the doctors will review it this week, then she said she will call me to make the appointment next week, so she seems confident that I will meet the criteria. I would think so, having MS and all!🫠
Keeping my fingers crossed🤞that my next appointment will be with an MS neuro and not the local neuro that keeps trying to bully me into thing. I can't really blame her, she is a general neuro, not an MS specialist, and she only knows what she knows, so I am trying to keep that in mind. But, that doesn't mean I have to go along with it. I'm hoping I don't have many infusion reaction, and that the nurses don't freak out if I do. In the meanwhile I've got to pick out a good audio book or movie to have something to do during the infusion (it's in a little over a week!) Any suggestions? If last week was any indicator, I'll be there like 8 hour!!🫠🙃And from the position of the last IV, I won't be able to crochet 😭🧶
Oh, and I could barely sleep for 3 days after the infusion!! Is that normal for after an Ocrevus infusion, or was that the steroid they gave me? It was awful and I could not stand it! I need my sleep! Any suggestions on what to do to alleviate that? I don't function well on hardly any sleep!!😵💫
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MSFlea
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I think the steroids are impacting your sleep 😢 I know that, when I was in hospital and I was on IV methylprednisolone, I couldn't properly get to, or stay, asleep for a good few weeks after 😢 But, that should wear off after a while, to the point where you don't have to worry about not being able to sleep.
With my 1st ocrevus, the antihistamines they ran through first made me so tired! I was so worried that I was scaring nurses with my just falling asleep, but the nurses had already had that happen, and know it's a side effect to antihistamines. If needs be, get some sleeping tablets, and take one 15/30 mins before you go to bed. If you're still awake after 15 mins of being in bed and trying to sleep, go and do your nighttime routine again. That should give your body enough time to fully absorb the medicine, and not deviate from routine which would cause more stress 🤷♀️
Probably right about the steroids. I'm sleeping good now, it was just those few days of going "why on 🌎am I not sleeping!?" 😂I have a good sleep routine, I battle insomnia, have most of my adult and teenage life, so a good sleep routine😴 is an absolute must and anything that makes my sleep mess up like that worries me. I've found with MS if I don't get sleep, it messes up my fatigue even worse, and it's already pretty bad!🫣
I'm the same with sleep and fatigue 😕 on top of that, I've got sleep sensitive epilepsy as well! 🫣 so, it's not safe for me if I don't have at least 6 hours a night 😞
It's strange to me that they didn't give you everything through the IV in the first place. I had a reaction to my injection, too, but oral meds were never a part of it.
And yes, it's the steroids that kept you up. After my first one I was bouncing off the walls for a couple days. I'd never had any before, so that was really weird. Glad things are falling into place for you!
They handed me the Benadryl in the cup to take and I asked them several time why it wasn't through the IV, etc. But they said it was how my neuro ordered it and that was how they had to do it. I was so frustrated!
The steroids being the culprit of my sleep being wonky makes sense. It hasn't ever made me not sleep well, but I've not had steroids through IV but the one time I had the infusion for my flare, which caused me not to be able to sleep for a few days, and this time.
And thank you! I'm so glad to be off Kesimpta!! I know it works so well for so many people, but it gave me days of side effects every month. This was so much better by far! A little itching, and some sleep going slightly wonky, not as much of a problem for me!!😀🧡🧡 And I won't have to have it again after next week for 6 whole months!!🥳
I was thinking the same thing…IV meds work almost instantly on infusion reactions, as opposed to oral which can take like 30mins. Definitely need to see an MS specialist to order the correct route for meds! So glad it’s all working out 😊
I almost always have itching in my mouth and ears within the first hour of an ocrevus infusions, so we stop and I get more IV premeds then start slowly again. I was told I could take benedryl at home for a day or so afterwards also.
I am so glad you were insistant about trying again with IV premeds, hope all goes well the second time. Only once was I unable to finish the infusion and it turned out I had a uti. I will be having my 1Oth infusion soon and now go longer between infusions as it takes longer for Bcells to begin repopulating.
I remember when I first started with Ocrevus as my DMT in January 2018, I would sleep through most of my infusion, MSFlea ! I just received my last infusion on November 4th, and all went fabulously well! In the beginning, I do remember getting itchy on my head, arms, and legs, but not anymore. Best of luck, and do give us an update on your next infusion!
I am also on ocrevus. I've had about 7 infusions. I did have a reaction once where my chest felt like there was an elephant on it. I told the nurses and they had to stop. So I only got half a dose. After that my neurologist and I decided to a run a 2nd line of saline while ocrevus was dripping. And to keep drip slower at 150. That seems to be working. Makes for a long day but it works. I had the elephant on my chest before and I just Powered through it. Nurses got mad so this is how I get ocrevus infusions done.I also get benedryl for premeds and can can't fall asleep. Bummer, I wish I could.
After infusion I am wide awake until well past midnight. Dang steroids.
Thankfully I have never had the itching. Good luck to you
Elephant on your chest had to be awful! The nurses ran saline when they stopped the infusion to do the meds to stop the itching. I was hoping for the sleep that Benadryl usually bring, but the steroids countered that! I was looking back and realized that the infusion made me really hungry too. We (hubby and I) brought breakfast and I brought one snack (new they had a snack basket) and were planning on hubby going and getting lunch, but he ended up having to work through... I raided the snack basket! Though snacks don't really satisfy very well. I think this time I'll pack a backup lunch, in case hubby can't get away to get lunch!
Sorry for your reaction, but you just tell then if you're itching. Everyone is right, request IV steroids, it will help tremendously. My second small dose they had to stop it until the flushing and itching stopped and then run it very slowly. I was on Ocrevus for more than 6 years, so by the second year, I no longer had itching. Also, by the second year the steroids stopped affecting my sleep. I did occasionally have some stomach discomfort. I hope you do well on Ocrevus.
when I had my first Ocrevus infusion the nurses had to stop my infusion due to small allergic reactions and they gave me IV Benadryl.
My first infusion took over 10 hours but the nurse told me that the reactions where due to the body being in shock due to the medicine. I was not able to sleep too a few days later and on my second infusion two weeks later it went very well and they gave me double dosage of IV Benadryl before starting and my infusion only lasted 4 hours.
When I then had my full infusion for the first time in May my body reacted really great to the medicine and my infusion only lasted 5 hours.
Hopefully your body takes in the Ocrevus like mine did in the second infusion and it goes much better for you.
I had a reaction. I felt funny and they doubled Benedryl. I ended up in the hospital. I disagreed with another Ocrevus infusion but my partner and Dr. thought it wasn’t the O. It took me 4 months to recover from the last one! I had it 5 months vs. 6 months I have had zero problems with that one!
Oh my goodness! I'm so sorry you ended up in the hospital and recovering for 4 months! Everything is so much harder with MS! I'm glad you had zero problems with the next one! 🧡
I am glad you are fine and it sounds like the benedryl caused the itchness. My son is on his 2nd treatment...so far he is fine. Just keep a diary of your sleepless evenings to track them accordingly. Stay safe and be well !
Sorry you had that happen to you. If you can tolerate your IV in your forearm you would be able to crochet. NOW YES it hurts getting an IV I don't care where they stick it. BUT once it's in & they quit messing with it it will stop hurting. I have had to deal with MS for over 30 years I have had who knows how many IVs. Several thousand at least. So yes you can have your IV in any vein that will hold it. The nurses will try to talk you out of having it in your forearm with "But it will hurt worse there". It doesn't matter where they put it "it will hurt until they have it set" then it will calm down & quit hurting. I will not let them put it in my elbow crook as sitting so long with my arm out straight it starts aching first then by 2hours my arm is cramping. I am praying for you & your treatments good luck & may God bless you & watch over you. Mary
🧡I tried to get the nurse to put the IV in my forearm, I think the nurse blew it just to prove it wasn't a good idea. She had it, then moved it and I still have a bruise there. That or she wasn't very good at IV's yet. I'll ask again with the other arm. They did the IV in the crook of my elbow, and I agree, I won't let them do that again. It was awful, and towards the end of the 8 hours, it was 'bent' and they had to keep fiddling with it to straighten it out. LOTS of tape! Pulling it all off at the end of the infusion was awful, they were not gentle. Thank you for the advice on that.. I do have good veins there, but they can find plenty elsewhere.
Getting so many IV's is somewhat new to me, but I've been sickly my whole life, so needles are not new. And my sister is a nurse, and I helped her through nursing school. AKA, I was her Guinea pig when it came to learning how to put IV's in, 🫣🤣They had to practice, and usually practiced on each other (the other students) but she had a difficult time, so got extra supplies and brought them home and practiced on me. I didn't mind needles, from getting shots all the time from being so sick all the time, so it didn't bother me. Plus, she became one of the best at doing IV's that way. 🙂🥳🧡
You were a very brave guinea pig. HIP, HIP, HOORAY!!! YEP I bet that that nurse blew the vein on purpose. Sometimes you have to take the bull (nurse) by the horns & let her know you are not happy with how the last secession went & talk with her first. That night help if not then get her supervisor involved. Putting the IV in the back of your least dominate hand will or should allow you to crochet.
That is an awesome idea! I don't move my left hand much when I crochet (I'm mostly ambidextrous, but I lean towards being right handed because that is how I was taught in school). I bet I could crochet that way, thank you! That would make the time go by much faster! 🧶🧡 I could listen to a podcast or audio book and crochet (hopefully) the day away!🙂🥳
I absolutely love Finley so sweet. I was on Ocrevus for many years and I never had sleep problems, hopefully it will go away soon. Now they give 2hr. infusions, you may want to talk to your doctor about it. I had to go off of it because I was getting to many uti's.
sleep is sacred for us insomniacs, so i'm sorry you went through that! even if they haven't a clue, neuros are notorious for god complexes. you shouldn't have to deal with that! i hope shepherd works out for you.🤗
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