Last reply 6 days ago
First Ocrevus Treatment

Hi all! I just wanted to put it out there that today was my first Ocrevus treatment and I was so nervous, like SO nervous. Especially about infusion reactions and things like that, for some reason I was expecting the worst… I would recommend to definitely NOT google reviews of your chosen drug before treatment (being educated is important of course, just be sure to use reputable resources) because remember, most people write reviews because they had bad experiences so it is very one-sided. Anyways, I was given steroids through IV pre-treatment as well as Benadryl and Tylenol. To my relief I experienced NO infusion reactions, besides sleepiness which could probably be attributed to the Benadryl. I was wondering if anyone had similar experiences and if some side affects/reactions developed in the days following treatment. Thanks ahead of time for everyone’s input, feel free to message me to chat or if you have any questions!

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itsmewithms
1 month ago

Thanks for your report. My first infusion is two weeks from today…please post updates. Glad all is going well 😉


em-nuss
1 month ago

@itsmewithms Thanks and Good luck! It totally isn’t as intimidating as it seems and the nurses are wonderful. I will definitely post updates :).


mlgilber1
1 month ago

I’m glad it went so well! I wish I had no reactions. Mine have always been minor thankfully, but it makes the infusions take longer. They purposely schedule me first in the morning because of it. I was thankful my last one only took 7 hours. Even tho I did react during I’ve never reacted after the infusion and I think it’s a lot less common to react afterwards. Just stay hydrated and take Benadryl if you need it and the nurse told me to take it the night after the infusion to help me sleep because the steroid always keeps me up. Good luck! I hope you do really well on it!


em-nuss
1 month ago

@mlgilber1 I was totally prepared to be there all day because with all my experiences with giving those high-dose steroids, they always end up having to slow it way down, luckily that wasn’t a problem. But thank you so much for the advice! The Benadryl is definitely a good idea. I hope you’re doing well on it as well!


mlgilber1
1 month ago

@em-nuss Thank you! So far I’m doing pretty well on it. I was using a walker prior to starting and haven’t needed it since a couple months after starting. Also, my last two MRIs didn’t have any new or active lesions.


em-nuss
1 month ago

@mlgilber1 That’s so great! We love a clear MRI. Thats so funny, a couple months ago I also was using a walker but have since been able to ditch it!


mlgilber1
1 month ago

@em-nuss I’m so glad you’ve been able to ditch it too! Now hopefully we never need one again! Lol


declan_perry
3 weeks ago

Hi @em-nuss , I had my first infusion a few weeks a go. I actually had a pretty crazy infusion reaction – went bright red and my throat started to close up. They stopped the infusion and gave me an injection of something (think it was adrenaline?), and it sorted me right out. Resumed the infusion and it was all fine.

The nurses tell me that infusion reactions get way less likely the more infusions you have. So all good!

Hope you’re doing well. 🙂


rel12
3 weeks ago

Thank you @em-nuss for the post! I have been treatment free for a few months because I am terrified of side effects. I do look up reviews on treatments a lot which isn’t such a great thing to do :/ Thinking of Ocrevus but very hesitant. I am glad this is working out for you!


em-nuss
3 weeks ago

@declan_perry Oh my goodness that is pretty crazy!! I’m so glad that you were okay and able to finish the infusion. I’m sure it will all be worth it in the end :).


em-nuss
3 weeks ago

@rel12 Oh yeah reviews totally freaked me out at first but once I joined communities like Shift, I saw how great Ocrevus has actually been for people. I’m getting my second infusion as I’m typing this lol and I have yet to experience any side effect *knock on wood*. Let me know if you have any questions!


veronika_keir
6 days ago

Hi @em-nuss,

I just had my neuro check-up and my MRI revealed new lesions and I’ve had a few attacks during the year- I have RRMS. My neuro has recommended we switch treatments because as he said “you’re not doing well on Copaxone.” He’s given me a bunch of options to read up on and choose from, his recommendation being Ocrevus. I’m pretty nervous about it, but Copaxone has been pretty bad.

I’m really happy to have found this post! Makes me a bit less worried. I’m obviously a few weeks, if not months, away from transitioning to Ocrevus but it’s helpful to know it might not be as scary as I thought.

Thank you!


itsmewithms
6 days ago

@veronika_keir I was on Copaxone for 11 years and had a few attacks during that time that required massive prednisone infusions to shut down but resolved within 48 hours so overall I suppose that isn’t too bad. At least that is what I thought. I changed Neuros as I moved farther east and my new guy really thought I should have been switched off Copaxone much earlier. He moved me to Rebif and I had no more attacks. He thinks this could be more due to the fact that I have transitioned to SPMS so moved me to Ocrevus.

In my first infusion I had a slight reaction with one earlobe being red and a splotchy spot on my cheek. They stopped the infusion and pushed benedryl and it cleared up with 10 minutes or so and they restarted the infusion. Felt pretty good following that and felt I was more stable on my feet, etc.

Had my second infusion yesterday and had no reactions so no pauses and all went well. For my next appointment (in 6 months) I shouldn’t need to be escorted by my husband ;-0 But I do think I will want to stop at a restaurant and have a leisurely lunch to make sure I am up to the hour drive home 😉

So far so good. Hopefully my balance and foot drop improve. I currently use a walking stick if I am going a distance or uncertain about the terrain, etc. I had several interviews through the summer and I think being in your mid-50’s and having a cane really sets off some red flags and they find another applicant “with experience that better fits the role”…yeah, right. I’ve been holding off on interviews until I don’t need the stick…I think my experience will finally fit the role ;-0


veronika_keir
6 days ago

@itsmewithms I think I’ve been pretty lucky so far. It appears I’ve had symptoms (specifically the MS Hug) all the way back to 2012. My GP dismissed it as anxiety. The only reason they caught it is because I started to go numb/tingly in my feet, then up my legs all the way to my sternum.

I’m very active, and continued to try and workout while the numbness/tingly feeling was happening. They did a thoracic MRI that showed lesions on my spine, and a brain MRI showing 11-12 lesions. After that I went on copaxone in January this year, and I’ve had flares since then. Optic neuritis in my right eye, some more numbness/tingly, MS hugs and now a new lesion. So he’s recommending Ocrevus, I’m hoping it will do a better job of keeping flare ups at bay.

I’m so sorry to hear about employers treating you that way. Once again, I’ve been pretty lucky, my current manager understands and empathizes with what I’m going through. I also haven’t had many symptoms that were visible.


itsmewithms
6 days ago

@veronika_keir I was pretty surprised by Aaron Boster’s take on Copaxone. He isn’t very supportive in it’s use unless you need a very safe DMT for someone that reacts to many things or between drugs as you are transitioning or if a woman is trying to get pregnant. But for the bulk of us it sounds like he wouldn’t recommend as he doesn’t see it as near as effective as most of the other DMTs out there. I’m slowly making my way through his library but he puts a lot out there! wish I lived a bit closer to Ohio! ;-0 https://www.youtube.com/watch?v=Sd69KmEpsWM

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