@littleladybug1 

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littleladybug1

Looking to start Ocrevus soon. What is your experience?

My neurologist is looking to start me on Ocrevus soon. I was diagnosed with MS about six weeks ago. Today my neurologist and I discussed what DMT I am going to start. She wants me to start on Ocrevus IV infusion depending on approval from insurance which hopefully will happen within the next two weeks. What I am curious about is what is anyone's experience with Ocrevus? I want to know the good, the bad, any reactions to the IV infusion on the day of and how you feel in between infusions.
@Johnsonsmith11

Hi, I’m Johnson Smith. Nice to meet you. I came across your profile and noticed you mentioned your health condition. I happen to know a doctor who might be able to offer some guidance. No pressure at all—I just thought I’d mention it in case it could be useful. For your privacy, please don’t share any personal or medical details here; you can discuss those directly with the doctor. With you like to know more about the doctor

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@Noise_chick

Welcome to the party. (You have my condolences.) Ignore the double last-name bot. 😝 This place is real. I'm having my Ocrevus infusion tomorrow. It's not bad, twice a year. First time takes longer while they test your tolerance. Maybe 5 hrs? If you're in the US they'll probably give you Tylenol and Benadryl to combat the most common allergic side effects: Itchy skin, skin rash, hives, flushing, headache, fatigue, fever, dizziness, nausea, fast heart rate, and throat irritation or coughing. It's like an allergy attack, mine is my throat getting constricting like an asthma attack or strep throat. ( It is literally shutting down some of your immune cells and some of the others cells freak out a bit) If it happens SPEAK UP they'll just stop the infusion and give you more Benadryl and wait a half hour before they start again. Benadryl will make you sleepy, don't expect to get any work done. Plan to watch a couple movies, read or listen to podcasts. And bring snacks! It is boring and cold and while they may have some options it's better to at least bring a protein bar and water. Bring a jacket or blanket ( they probably have blankets but nesting with comfortable things makes it less scary. ) Anyway, I've been on it 3? Yrs and they have me on a faster drip so it only takes maybe 3 hrs. The Benadryl hangover means I just go home to sleep it off. Plan a whole day off and just chill. *Yes, they legally want someone to drive you home and for you to wait an hour after the infusion before you can leave ( and that's best the first time) but at least in Wisconsin you can sign a liability waiver to leave when you're done. Results may vary. To me, infusion is easier than a daily pill ( I'm on too many that have interactions with a lot of them) or monthly injections. I have to take a Xanax when I go because I freak out over the blood draws and the fiddling with setting up the IV. Other than the IV setup it's pretty painless. The stupid IV beeping every 15 minutes for flow checks means you can't just sleep through it all but it's kinda funny to just sit there passively dozing while bio-engineered ninjas kick your rampaging dinosaur immune cells butts and puts them in time out for six months. Look up "the crap gap." It's a thing I don't have, but it's a recognized thing ( basically the ocrevus wearing off too soon and old symptoms returning a month or so before your next scheduled infusion.) It the US the drug company has co-pay program to drastically reduce "market price." 🤮 It works for me and I haven't had a real relapse in 4 yrs.

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