Ocrevus... Update!

[MSFlea]

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!!😵‍💫

[Cwright170994]

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 🤷‍♀️

[MSFlea in reply to Cwright170994]

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!🫣

[Cwright170994 in reply to MSFlea]

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 😞

[NorasMom]

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!

[MSFlea in reply to NorasMom]

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!!🥳

[Jer29-11 in reply to NorasMom]

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 😊

[starlight5]

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.

Good luck to you!

[MSFlea in reply to starlight5]

Yay for having your 10th infusion!

And thank you!

[RomCom87]

I am on ocrevus. I take Tylenol PM to help me sleep. I only take one tablet because two tablets will make me too sleepy the next day.

[MSFlea in reply to RomCom87]

That might be a good idea. Thanks!

[carolek572 CommunityAmbassador]

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!

[MSFlea in reply to carolek572]

Thanks! And will do! I'm glad you don't itch any more!

[carolek572 CommunityAmbassador in reply to MSFlea]

Well, I don’t itch, from Ocrevus, anymore, MSFlea ! 😆

[jkdavid99]

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