Ocrevas Infusions

[Marz91]

This week I'll start Ocrevas Infusions. I will have 3 this year since this MS is in its early stages. But I want to know has anymore had these Ocrevas Infusions and if so did you have any symptoms/complications afterwards? I go tomorrow for the 1st infusion (which will be 300mg) and then go back in 2 weeks for another one of 300 mg, total wil be 600mg infusion. This is still kinda of new to me and still haven't quite coped with it.

[mrsmike]

I've been getting Ocrevus infusions for the last 3 years with no complications. Good luck with your first infusion.

[Marz91 in reply to mrsmike]

Thank you so much for your feedback! It's appreciated!

[Marz91]

I did go through 3 preliminary infusions with Solumedrol and didn't have any side effects as of now.

[twooldcrows]

i have been on Ocrevus since 2017 and no problems ...good luck ...love and much happiness...

[Marz91]

Thank you it's appreciated!

[NorasMom]

I'm one of the ones who did have some complications with the first dose, but they weren't serious. Out of the blue, about an hour into the infusion, I developed a sudden itchy rash all over my face and upper chest area. My throat was suddenly sore, and it felt like I was having trouble breathing even though I wasn't.

These are normal but not common. I called for the nurse immediately, she halted the infusion temporarily, gave me extra steroids, and the problems went away as quickly as they began. The rest of that day's infusion was a little slower after that, but I was fine the rest of the day and again for the other half a couple weeks later.

Take a large bottle of something to drink, some snacks, and a book or electronic device to keep you busy. If you're lucky, they'll provide all of that, but don't count on it. I actually slept through most of mine. I recommend having someone pick you up when it's over. I would've fallen asleep behind the wheel if I'd driven myself, although the steroids (first time I'd ever had any) kept me awake hours later.

[Marz91 in reply to NorasMom]

Thank you so much for your feedback, its appreciated. I already have a plan in place. Im not driving at all period. Also Im going to bring a bottle of water, snacks, a crossword book to keep me busy during this.

[Tuliplover]

Hi, I had my first Ocrevus infusion this past Friday. It went better than I expected as I’m typically sensitive to medications and have reactions that doctors say are rare.

Everything I experienced was what I was told to expect as a “normal” infusion reaction. During the infusion, I experienced itchy scalp, throat, and ears. I was offered more Solu-Medrol and/or Benadryl but turned it down bc I didn’t think it was bad enough to warrant more meds. The itchy throat & ears were much better with a menthol cough drop they gave me. Also, the Benadryl knocked me out (was awake but barely) until the last 30 minutes or so of the observation period.

Afterwards, I experienced mild/moderate headache, fatigue, body aches, and flushing/warmth. I am starting to feel better but was very fatigued Saturday and Sunday.

Hope this helps! Good luck with your 1st infusion.

Jennifer

[Marz91 in reply to Tuliplover]

Thank you for your feedback & it's appreciated!

[Jmhnath]

I started Ocrevus in 2017 and have had no complications. The Benadryl can make you sleepy, so I bring a blanket, headphones, and my cell phone, and take a nap while I listen to podcasts. Definitely bring food and a drink for the 6-hour infusions. Good luck! I hope all goes well!

[Marz91 in reply to Jmhnath]

Thank you for your feedback & it's appreciated!

[Shamrock10]

I started in February of this year so I have only had the 2 half doses so far. I was sleepy during the infusion from the Benadryl, but otherwise ok. My infusions were in the morning and I was very fatigued later that afternoon and the next day, but felt fine after about 24 hours. I am experiencing some hair thinning now that I am a few months out from the infusions. There are some other posts in this forum talking about that side effect. Good luck!

[Marz91 in reply to Shamrock10]

Thank you for your feedback & it's appreciated!

[Tuliplover in reply to Shamrock10]

Thank you for your comment about hair thinning. I have read about that in other posts here and was wondering when that would happen. I had hair thinning when I started Tysabri but it normalized after a few months so I’m hopeful it will only be temporary on Ocrevus as well.

[MsBoo]

I'm on Ocrevus from Tysabri. Been on it for about 3 years now. I have not had any problems with it. Hope it does what you and your dr. wants it to do.. Good luck to you dear.

[Marz91 in reply to MsBoo]

Thank you 4 your feedback & it's appreciated!

[OzzyRobo]

I've taken 1 rituxab/rituximab (1000mg) infusion so far and second infusion coming this Thursday(6months apart). No side effects during my first infusion. Started at 50ml first hour then increase at higher rate every 30min by the nurse. Was check every 30 mins or so during the infusion. Benadryl is fun times.

[Marz91 in reply to OzzyRobo]

Thank you for your feedback & it's appreciated!!

[JMWCO]

Good day Marz91 ,

Ive been on O since spring 2018. Like others said bring things to do but honestly just roll with the sleep (I don’t get sleepy anymore but I now get home infusions so I just plan to go back to bed; 😂).

When I did go to the infusion center I packed a neck pillow, eye mask, noise canceling headphones, books, work , laptop and tablet as I didn’t know how I’d feel and what I wanted to do. Nevertheless I continued that routine into my home infusions but 80% I just go back to sleep.

My initial doses I got itchy scalp, cotton mouth and felt my skin get weird but some extra Benadryl made it all better and it only happened to me in my first two doses. Take the Benadryl even if it’s the last hour like my symptoms as you will have an observation period afterwards.

I now get it rapid but it’s still several hours but I’m used to the med.

Sorry to hear you joined the club; but it’s a good group of people here even if you are just a fly on the wall. Checkout past threads - there’s some good ones and know it’s all about adjusting to the new normal and it’s not all bad ass sometimes we need the kick in the pants to change our habits.

Cheers

J

[Marz91 in reply to JMWCO]

Thank you for your feedback & it's appreciated! I'll look at some of the other threads as well.

[Spirit67]

I've been on Ocrevus for several years.. I had my infusion yesterday. Today I have a slight headache. It usually takes a day or two to start feeling better. I always drive myself to and from my appointment. Like the others commented, the Benadryl always puts me to sleep, so I take a blanket and a small travel pillow to make myself more comfortable. I sleep for about the next 2 - 3 hours. I take a thermos of tea and a pack of chips or crackers for a snack after I wake up. My infusion center does provide drinks, snacks and blankets, but I always take my own. Hope your infusion day goes well. 😉

[JSSimp]

My prayers are with you🙏🏾

[lcms1]

This is a new journey for you and I’m sure everyone’s talking to you like you know wtf is going on. I’ve been there and still at times feel there. Just know, you’ll be OK. With the advancement in science, medicine and cancer research (which a lot of MS drugs seem to come from) you’re definitely in better hands in this day and age than 50 years ago.

I started my first Ocrevus treatment this past December and had the follow up half infusion 2 weeks later in January. I have my 3rd infusion in June. No bad reactions experienced. I use to be on gilenya (pill everyday) prior. At my last follow up in February with my neurologist, she told me that Ocrevus has been a real game changer in MS medicine and it’s becoming preferred throughout a lot of neurology facilities.

I had a bad relapse end of October/beginning of November (was weened off Gilenya for pregnancy and not on any medicine during that time). I started feeling like myself starting in late February/early March. That’s all I want.

There will be scary days, but there’s also good days ahead too.. Like times where you forget you even have MS! Those days are the best. You’re going to be OK and this community has got your back.

[Mollyabigail in reply to lcms1]

I agree with lcms1. It's scary as heck at first. The person you always pictured yourself as being is ... gone. Give yourself time. This is life changing and shocking! I just had my 3rd Ocrevus infusion with few side effects. but my nurse likes to speed things up about 2/3 of the way through. I am a tough old lady, but when the drip starts going FAST, it feels like I am being strangled. When I told him, he said, "We will have to slow it down." But he didn't! (home infusions). Maybe he was ready to get on the road to his next stop?? Speak up if you need help!

Best wishes and prayers coming at you, Marz91. 🙏

[Marz91 in reply to lcms1]

Thank you 4 your feedback & its appreciated! I have a background in healthcare & mental health. Now my life has changed because now I am the patient & I see everything entirely different now.

[Cutefreckles72]

I started Ocrevus in August 2019 and so far, I haven't had any problems. The hospital I go to for my treatment provides snacks and juice, a comfortable reclining chair, TV, blanket, and a view of the city. I just hate being stuck two or three times with a needle because my veins are so little. Hang in there and you will be ok. 🙏🏾👍

[Marz91 in reply to Cutefreckles72]

Thank you for your feedback & its appreciated!

[Canadianpianogirl]

I’ve had ocrevus infusions for four years. I get Benadryl, and sleep for much of it, Afterwards, I’m a bit sleepy, but when that wears off, the steroids make me feel like I want to go dancing! Seriously, I always feel amazing on the days immediately following! I haven’t had any adverse reactions. (And no new lesions since I started it!). Fingers crossed for you!

[Jesselespaul in reply to Canadianpianogirl]

Me too! I get Benadryl, solumedrol, and Tylenol before. Rituxan next and then a big bag of saline after as a buffer. For about 24 hrs I feel “normal” - as in no MS. Use this time to do tasks that are difficult otherwise. Dancing - well said! My treatments (every 6months) are covered by retirement insurance as an approved exception. Fingers crossed indeed!

[tompumo]

I've been on Ocrevus for about 5 years. I've had absolutely zero reaction of any kind, from the first dose. It has leveled out my MS symptoms- I highly recommend it. But, you MUST find an organization to pay for it for you, as it is outrageously expensiv.

[sMilEs_N_bLuE_sKiEs]

Welcome to the land of misfits!A place none of us wanted to be part of, but a place you will be loved and accepted. Welcome! 🤗

I have been on ocrevus for 2 full years now, I’m up for my next infusion within the next few weeks.

Stay hydrated leading up to infusion, it helps.

Good luck! 🍀

[Marz91 in reply to sMilEs_N_bLuE_sKiEs]

Thank you for your feedback! I have been drinking water anyways. Also Im having problem with a Celiac Artery that needs to have surgery asap

[anaishunter]

I've been on Ocrevus for 4 years. No pb with the infusions. I drive myself to and back to the infusion center (1hr drive). Ocrevus infusions have been a no event for me and resulted in no lesion activity on MRI (= no new lesion and no active lesion) which is the goal.I would make sure to get a blood test prior to any subsequent infusion to evaluate T-cells and B-cells so that your immune system does not get depleted to an unhealthy level.

[JMWCO]

Oh I forgot to mention post infusion in the early years I had to have a heart love you!! Lunch and a COOKIE/Sugar and it helped with the post infusion haze. Today, I just have a bit of sugar and a normal lunch for me but still find it helps “begin” the rest of my day.

[Spanishpopmama]

I have been on Ocrevus for years and have never had any complications. The only thing that affected me negatively was when they gave me the double dose of Benadryl. They told me I was going to just sleep but unfortunately I am one of the patients that it affects oppositely. Now, I am able to take the infusions without the Benadryl and have no complications. They just remind me that if I feel any weird symptoms that I just them right away. Is this the first dmt that you’re using?

[Marz91 in reply to Spanishpopmama]

Yes it is..

[Spanishpopmama]

Wow…. It must have changed in the 8 years since I was diagnosed. My neurologist told me that insurance will only cover meds like Ocrevus after other DMT’s have failed. He refused to put me on Tysabri at first….. maybe it wasn’t the insurance company!