My first Ocrevus infusion | process, experience & side effects | living with multiple sclerosis
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- Опубліковано 19 чер 2022
- Hey everyone!
So I’ve just started my new treatment for relapse remitting multiple sclerosis. I’m now on a drug called Ocrevus which is administered intravenously. The infusion is every 6 months and usually takes around 5 - 6 hours, except for the first dose. The first dose is split into two sessions. So this is the first half of the first dose and I’ll be getting the second half of the first dose in two weeks time. It’s also administered much slower than the following doses as it is the first time your body is exposed to the drug. So I was in there for 5 hours for half the dose.
My main side effects initially were itchy throat and ears. My lower back was also sore for the first day. After that, fatigue and weak legs are my ongoing side effects. Hopefully it’s just an initial side effect and will pass shortly. I also have to be super careful for the first month after getting it as I’m really immunocompromised now. I’m staying indoors as much as possible and not socialising with anyone. But I should be good to go back to normal after a couple of weeks.
I’ll do a follow up video aswel when I get the second half. It’ll be interesting to compare the two doses.
Thanks so much for watching, hope you enjoyed the video 🥰
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#livingwithmultiplesclerosis #ocrevus #chronicillness #shorts #multiplesclerosis #autoimmunedisease
So glad I found your channel 😊 My first Ocrevus infusion is in two days so it's nice to know what to expect.
Awh thank you 🫶🏻 best of luck with your first infusion 🩵🩷
Thanks for sharing your experience. I hope you are feeling better soon! Love your puppy!
Thank you so much! 🥰🥰 I knowww, she's just the best 🥰
Congrats on getting through your first infusion. All the best for the second dose :)
Thank you so much 🥰🥰🥰
@@jessiebarry279 I am now 3yrs in. It has changed my life. Best stuff ever
@@danataylor4644 that's so amazing to hear 🥰🥰🥰
She’s such a cutie pie. Thanks for sharing your story.
Thank you so much 🥰
Thank you for doing this> I am just about to start on this drug and found this very helpful thank you. 😀
You’re welcome, glad to hear they’re helpful. Best of luck with it 🫶🏻🩵
Thank you for documenting your infusion experience. I just had my first infusion today and had itchiness in my ear and throat and they gave my anxious ass some extra steroids. Sorry for your throat symptoms, but I'm also relieved it wasn't just me. "is this how I go, my throat closing up and an itch in my ear?!?!?!?"😅. All the best! ❤
Hahahahah I know what you mean 😅 always great to not be alone! Hopefully the next few days go well for you and the next infusion is easiesr 🧡 I didn't get the itchy throat and ears on the second one 🙌🏼
@@jessiebarry279 Oh, I so hope that I won't get the itchies on my next infusion in two weeks. I've been looking for a tolerable medication since last November, so I'm ready to stay on Ocrevus 😅 And thank you for your quick reply! 🙂❤
@@sulesima yes absolutely! I hope it works out well for you 🧡 it can be really tough and draining trying different treatments. Infusions every 6 months would be great too! 🙌🏼
Thanks for the videos ! You make it a bit less scary. I have decided to take this medication after a year of seizure medications and being to scared of MS medication. Now to see if I can take Ocrevus then be taken off epilepsy meds. Yay for seizures and MS No ONE KNOWS SHIT HAHA! 🤪
Awh I'm so glad my videos have been helpful and thank you for letting me know. That sounds so scary and frustrating that people don't know what to do 😔 I wish you all the best with Ocrevus 💛
Made me think of you.
Thank You
💖💖
@@jessiebarry279 hope you enjoy, I thought you'd like it.
How is everything going do you have an update video?
hi, i’m watching your videos on MS. i watched the one where your tablets weren’t working. in that video you stated you had a new lesion on your brain but you had no symptoms. did you ever have any symptoms that followed after that video was made? and are you having any new symptoms now that could be possibly caused by that new lesion?
thanks a lot
Hi there, no I haven’t experienced new symptoms since then. I have symptoms of MS relating to my memory, brain fog etc. But I didn’t go into a full relapse or experience any debilitating symptoms since then.
@@jessiebarry279 hi, that’s great news to hear that you have no new symptoms. I have RRMS too since i was 16 and now i’m 21. i’m on ocrevus and it’s working wonderfully. Good luck and prayers to you on your journey.
@@Zach2A thank you so much! 🫶🏻 best of luck to you too. Great to hear you’re doing well on Ocrevus 💛
I was on Gilenya for 5yrs , now it's no longer working. So I'm due for my first infusion in December
Best of luck with your first dose 🩷🩵
What was your reason for switching? Considering asking to at my next appointment.
I had to go on a stronger treatment because I got a new lesion on my brain. Totally get you, I found taking daily tablets as a constant reminder that I had MS. It was also easy to forget to take them.
All you can do is ask, see what they say . Best of luck 💛
So it turned up on your scan? Waiting till next month for my scan but worry about developing symptoms and nothing showing on a scan.
@@mikesimmonds1916 yeah I had a new lesion and no symptoms from it so I had no idea it happened while taking Tecfidera.
I think if you have a few reasons/concerns about your current treatment and just explain them to your consultant. If your current treatment isnt working properly or you feel you would be better off on a stronger treatment, there are so many options out there. Loads of MS patients go through multiple treatments so I would say they are used to people changing all the time. I know it can be different depending on where you are in the world though so I can only really speak from my experience in Ireland.
Tecfidera gave me horrid side effects. The flushing was intense enough I couldn't fight through it. Was like having a severe allergic reaction multiple times a day.
Same! My flushes were so annoying. So glad to be off it now.
Super woman 🦸🏼♀️
Thank you 🥰🥰🥰
I wish you all the best. But you and everyone who takes this drug should know that the drug is in the 3rd experimental phase, which ends on January 12, 2027
About kesimpta kush mendon ti se eshte me e pershtatshmja akoma nuk kam filluar dhe me kane sugjeruar kesimpta
What does that mean to you it being in the 3rd stage? Good or bad I’m considering but am terrified because of potential side effects.
@@leonardnardi9528 në Suedi unë në 9 dhjetor mora dozën e parë të retuximab. Dhe pas 2 javesh qe bera analizat, qelizat B ishin ulur.