First full Ocrevus Infusion: Today is my... - My MSAA Community

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First full Ocrevus Infusion

Raingrrl
Raingrrl

Today is my first full Ocrevus Infusion. I’ve been here since 9:00am PST and have a couple more hours to go including the monitoring time. So far, it’s been fine other than I hate sitting still for this long. I’m glad to not have to sit through this more than once in every six months.

27 Replies
oldestnewest

My Rituxan Infusion is 4 to 6 hours every 6 months. I meet alot of people going through the same or worse.

Raingrrl
Raingrrl in reply to RoseySawyer

Interesting RoseySawyer...I’m at a regional infusion center where I also got my Tysabri infusions for 5 years. I rarely see anyone here as long as me on a given day but there are cancer patients that come in multiple days during the week. This center will only treat 2 MS patients at a time so that could be why I don’t meet others enduring the same thing.

RoseySawyer
RoseySawyer in reply to Raingrrl

I get my infusions in my Neurologist's office. She specializes on MS.

My Neuro is also a MS specialist and it's an hour and a half drive so they set me up with a local infusion center that trained for Ocrevus as well. It's about a 10 minute drive so that's a lot better than a 3hr round trip and the 4 hour infusion time... uggg that would be a really hard day! I'm so thankful for the accommodations my doctor's office is willing to help with to make things as easy as possible on me

I use to go to the infusion center at the last hospital I was at because my insurance back then would only cover it there and they finally started covering it in her office, but since I don't have insurance right now, a company paid for my last two infusions and it's always in her office now. As soon as open enrollment comes around I'm getting insurance. 😊

In right there with us on that, without a doubt. Makes me cramp up! Hope it continues to go smoothly ☺

Raingrrl
Raingrrl in reply to Allen5280

Thanks Allen5280! I just got up and walked around the floor for a couple of minutes. I feel a little better but can’t wait to be done and on my way home.

Iona60
Iona60 in reply to Raingrrl

Glad that it's going well.

I take Gylenia 0.5 MG tablets every day. I used to take shots once a week. This new med has zero side effects. I love it.

Hello, I’m most likely starting Ocrevus before the end of the summer. Would you mind commenting (when you know) on how you feel right after the infusion? I might need to drive over an hour home after my infusion, and I’m wondering if I should bring someone along to drive me home? I’m also wondering how you feel in the day or two or so after the infusion? (thinking about work). Any other information you can share will be appreciated. Thank you. Best wishes to you!

bavery207
bavery207 in reply to Ethyrum

Ethyrum I have had the 2 half doses of Ocrevus and one full dose. My next full dose is Aug. 1. First, as with most meds. we each react differently so I can tell you my experience but yours may be different. For me I had no real side effects except the first 1/2 dose wiped me out for about 5 days. For later doses I was fine. You are given some Benedryl before the infusion and that makes most people sleepy so it would be good to have a driver. At my infusion center their protocol is to use Zyrtec instead so sleepiness was not an issue. You will be at the infusion center several hours so take plenty to do in case the Benedryl doesn't put you to sleep. I am sure others will tell you their experiences, which will be varied. I know this doesn't really help you plan, but hopefully it will give you some idea of what you might expect. Best wishes to you, I hope all goes well.

Ethyrum
Ethyrum in reply to bavery207

Thank you so much!! I appreciate your information. The more I can learn from everybody, the more at ease I’ll feel. I definitely realize that everybody reacts differently to something like this. Have a good day! 😀

Raingrrl
Raingrrl in reply to Ethyrum

Hi Ethyrum!

The Benadryl given before Ocrevus made me sleepy for the first hour of both half doses and yesterday’s full dose. But after that, I’m fine. I always bring a 16oz coffee with me so maybe the caffeine helps.

Right after yesterday’s infusion I felt like my normal self. I didn’t get the headache until hours after being home. I was a little stiff from having sat in the infusion chair for sooooo long but that went away quickly as I walked to my car. I didn’t need a driver at all and I drive about 45 minutes each way from home to the infusion center.

In addition to the coffee I brought a bottle of water, something for lunch and some nuts to snack on. I don’t get any weird taste in my mouth from the steroids so didn’t need anything for that even though I brought some hard candies with me.

I had my tablet with stuff to read but my vision problems make it difficult to read for long. So the long infusion time meant I was bored a lot but I expected that.

Each of us is different so your experience may not mirror mine. You know your body best and what you can tolerate. Good luck! Let us know how you do

Ethyrum
Ethyrum in reply to Raingrrl

Thank you so much! I'm glad your experience is going well...may it continue :-)

I'll keep all this in mind, and that we all have different reactions to these situations. Have a good day! Hope it's cooling off where you are. I think by night time here the temp should greatly improve.

kdali
kdali in reply to Raingrrl

Love your infusion prep 😍

carolek572
carolek572CommunityAmbassador

Hey Raingrrl,

My only concern as well with Ocrevus was the infusion that lasts over 4+ hours, but it is only twice a year. I had my first infusion back in February, and so far, so good. I have noticed that my gait is better, my overall outlook is better, etc. I hope positive results for you.

Keep smiling!

Carole

Raingrrl
Raingrrl in reply to carolek572

Thanks carolek572! I haven’t noticed any positive changes from Ocrevus so far. I’m not really expecting any just hoping it keeps my MS as stable as Tysabri and prevents progression. Since Ocrevus has not been tested in anyone over 55 that makes me a lab rat. MS neuros don’t even agree on whether there are benefits in given DMT’s to older patients. I’m a strong independent person and my outlook has been to fight this beast every step of the way. I’ve been doing that for 19 years and will keep doing so.

carolek572
carolek572CommunityAmbassador in reply to Raingrrl

From one lab rat to another, stay strong and positive! I JUST turned 55. I was diagnosed with PPMS in 2006 and to this day, my neuro still cannot explain my slow progression of my MS! I have been on Copaxone, then Tecfidera, and now Ocrevus. So despite all of their MS education, they STILL don't have all the answers. So, stay STRONG and POSITIVE!

Raingrrl
Raingrrl in reply to carolek572

I went from Copaxone to Tysabri and now Ocrevus. I’m very strong and positive but in a fierce way so my frame of mind may not come across in writing. One of my favorite sayings is “Though she be but little, she is fierce.” It describes me to a “T”. And yeah...the doctors don’t have all the answers for sure.

carolek572
carolek572CommunityAmbassador in reply to Raingrrl

Raingrrl,

Stay strong, my friend. "Though she may be little, she is fierce" also describes me to a tee! We sound like we are two peas in a pod. LOL

Keep smiling! You have made my day! :-D

Carole

Saw your post to Raingrrl and wondered about what you said about your gait being better. I was diagnosed in 07 and my walking is really getting bad. None of the drugs that thry have put me on helped. Maybe Ocrevus?

carolek572
carolek572CommunityAmbassador in reply to barbaradonnahoe

Hey barbaradonnahoe,

Yes, I was having trouble with my left foot drop and balance. I have seen better balance and I seem to be better with no foot drop as often as before Ocrevus. Everyone's experience is different and I would encourage you to talk with your doctor.

Keep smiling,

Carole

Hooray!! I love the app Alpha Bear, it's super cute and a good time killer. I hope you're some soon! 🎉

I get Benadryl first, it also a steroid that keeps me up for a few days. It’s an interesting place to be, your body is tired, but you can’t sleep. I will generally go out to my shop and work on something quietly though the night. After a couple of days, I’ll finally crash. I did get a headache this time, but I put a drop of peppermint oil on my thumb and rub it on the roof of my mouth for a bit and the headache goes away. Other than that, the infusion is no big deal and I get to chat with all the folks around me between naps.

I'd love to hear how Ocrevus works for you. I'm starting it in October. John

Ethyrum
Ethyrum in reply to Johngm

Following (now I’m hoping to start in dec or January)

Raingrrl
Raingrrl in reply to Johngm

Hi Johngm... It’s been a little over 9 months since my first 1/2 infusion and a little over 3 months since my first full infusion. I have not noticed much change either positive or negative. The only thing that I can attribute to Ocrevus is that I do seem more susceptible to catching stuff. I normally don’t get sick but have had two virus episodes since the first dose. That’s abnormal for me...or at least it used to be.

Everything else that has happened seems like my usual symptoms or fluctuations in my usual symptoms due to heat, lack of sleep, etc. I’m not surprised by this normalcy because the primary function of Ocrevus is stability. It’s been 19 years since my diagnosis and I likely had MS form 10 years or more before that. At this stage, I’m grateful for stability.

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