Hi MS family,
I will have my very 1st Ocrevus infusion next Thursday. Anyone out there that is willing to tell me line by line what to expect? Unfortunately I am also having issues with my neurologist, he retired without notifying me so I don’t have someone following me right now. I am a little worried about it all but I don’t want to cancel my infusion because everything that I have researched says to get on a DMT right away.
Help😊
It's been a while for me (I had to drop it), but take drinks, snacks, and something to occupy your time (book, tablet, MP3 w/headphones). Wear comfortable clothes. Plan on a good 4 hours for the procedure, and I recommend having someone else drive you there and back.
At our hospital, I was assigned to a nice recliner in a private room. If I remember correctly, they'll dose with you steroids and Benadryl before starting the Ocrevus. You may feel a bit of heat when the Ocrevus starts entering your body, but that goes away quickly. You'll be alone for most of the treatment but with medical staff within calling distance. Mine were quite attentive without hovering.
You'll be able to use the bathroom as needed, so don't worry about that part. However, if at any point you start to feel itchy, notice redness on your skin, develop hives, or feel like you're having trouble breathing, call for the nurse right away. Only a small percentage of patients have any problems, and nearly all of them can be treated instantly with extra Benadryl. If this happens, they'll pause the treatment briefly, then do it at a slower pace.
I dozed off during the treatment and was surprised when they told me I was finished. It's very much a no-fuss/no-bother thing; it just takes a while.
It's been a while, but I'll try...
Chair, Tylenol, vitals, IV start, Benadryl, solumedrol, infusion start. Vitals before each infusion rate increase, boredom, feeling cold, bathroom trip with the IV pole, a snack or nap, done, vitals after, IV out, go home.
I'm not completely clear on what is meant by line by line but I'll do my best. This is my second year so I've taken it four times now. The first time you get it they're going to break it up in half dosages, with the second coming 15 days after the 1st. The reason for this is to make sure you don't adverse reaction and to slowly introduce it to your body. It being your first time you will be heavily monitored so is to catch any issues that might occur. They're going to give you a lot of antihistamines, both oral and intravenously(through your IV). They also have a syringe of antihistamine on standby in case you have any kind of histamine reaction. I myself felt minor swelling at the back of my throat near my nasal area but the standby antihistamine made it stop. After that they ran the Saline IV by itself for a little while without the medication. They then continue the medication with periodic check-ins. You going to be there awhile because it's going to be on a slow drip and if you have that reaction they might slow it even more. And even afterwards they have to monitor you to make sure you don't have a delayed reaction. You're going to receive the same treatment on your second half of the medication as well as 6 months later when you take a full dosage in one sitting. The time you spend there on following visits really depend on your reaction to the medication but I was told they get shorter. My first go around I was there at 8:00 a.m. and didn't leave until 2:00 p.m.
Thanks for the details!!
You have good replies here, RTR1. Kdali summed it up well! It is easy. I get home infusions, and it's the same guy (RN) every time. He likes to speed the IV pump up about 2/3 of the way through. (I guess he has other patients to see). But the faster rate makes my throat feel like it is closing up, and I say so! Then, he will slow it down. The only thing I can add here is -- speak up if you start feeling funny. They are equipped to handle any reactions you may have.
You mentioned research. Jimeka says she does not research. I tried less research, and it reduced my anxiety a lot. Being new, I also did a bunch of research in 2020. After all, they say knowledge is power, right? But constant research and grabbing every article I could find was adding to my stress. Just saying - if the research ever starts stressing you out, try not researching! 😎 Good luck with your infusion. Let us know how it goes.
thank you and more great info!!
You make a good point about researching. Since some research is just too technical for a lay person and since so much information is just opinions that conflict and contradict, anxiety is often the result.
Totally agree with you about reading research . My neurologist told me to quit reading and relax.
I really sympathise with you and your neurologist. My 1st one left my trust, but the MS specialist nurses have always been there to help me, and are there when I need to ask questions and report any new symptoms. I get post from them, specifically blood forms when I need to have bloods taken. This is usually 2 days before the infusion. Because I'm not medically allowed to drive (try adding epileptic seizures in with the mix) I get patient transport to the hospital. On the day, I've got a bag and a blanket packed, and I'm wearing leggings (because they're comfy) and a top that is either baggy, like a baggy jumper, or really short/no sleeves. I like to plan on which arm I'm happy to have an IV in. You can't have it in the same arm that you had the bloods from because the 2 days since isn't long enough for your body to properly repair itself. But, when you go in, they'll ask you for a urine sample. I didn't have a sample pot for my 1st one, but they gave me a pot for that day, as well as another pot for my next infusion. They also didn't mind that my 1st sample had period blood in it (yay 🙄). After, they got me into the room, where I had my observations done, as well as the cannula inserted. They took bloods from the cannula too, before clearing it out with a saline drip. I took my seat, set up my phone charger because I knew it was going to be a long day, and waited for the pre-meds. This includes baclofen and prednisolone being infused. I love the prednisolone infusion! I came in using a wheelchair, and I was able to walk again not long after the prednisolone started! I then had to wait for the ocrevus, because the bloods taken that morning had to go and be tested again, and the pharmacist didn't want to ok a batch for me beforehand because it would have to be binned if my bloods weren't right and I couldn't have the ocrevus that day. But, I was fine, and I got my 1st half dose! I got monitored frequently, often having nurses wake me up because they know antihistamines are known to make you sleepy. I can't remember if I had to have that dose slowed, but I do know they can do it. I also know that you're free to go to the toilet, with your drip, but you can't go outside for a smoke unless you've signed a document saying something like "anything that happens to me outside the ward is not a fault on the nurses." I was in there from 7:45 to 17:00. My infusion had finished an hour or so before, but I had to wait on patient transport to pick me up. I felt better when I got home, and my MS nurse has told me I can take 5mg prednisolone as and when needed when coming up to a full dose. I get these from my general practitioner's (GPs). I'm excited for my next dose, because it means my wedding is 3 weeks away! My nurse was fine with me asking to change the date of my infusion, because it was originally on my wedding date! Managed to count up the weeks before my call with them, and my nurse was happy, and wanted me to be able to walk down the aisle and not be as immunocompromised 🙌
Thank you and I hope you enjoy a beautiful wedding!!
Thank you 🤗 and I will be doing, not spent the better part of the past year planning it for it to be bad 🤣
I know exactly how you feel with your doctor suddenly retiring. Mine did that also and after 6 tries I found a doctor in my area which is a blessing bc I was having to travel a long distance to see him. As for your first infusion it should be non eventful. The nurse will give you Benadryl and steroids as a precaution to any allergic reaction to the medication. Then after 30 minutes your Ocrevus will begin. When the Ocrevus is finished they will begin a saline flush which will last an hour. Honestly the worst thing that I have experienced is pure boredom. Bring a snack!! Relax. You’ll be fine 😉
I always take my laptop PC and a couple of movie DVDs to pass the time.Fortunately, I have never had any adverse reactions to the infusion.
So many great detailed responses! RTR1 Thanks for asking the question- we are in the process of getting authorization from my insurance company for the ocrevus treatment (in the meantime 2 more MRIs and bloodwork and eye exams- I was just recently diagnosed with MS so I’m hopeful after all of this there will be a lot less appointments!).
Anyway - thank you for asking the question and please give an update of your experience. I love this community- it feels like we are all in this together and we have others around us who understand the situation.
Be well 💝
Thank you and I will update after my infusion next week. Hang in there with your insurance, my approval took a couple of months.
Sounds like everyone has given you all the details. The infusion centers are different but the actual process of the infusion is the same. Make sure you are VERY HYDRATED before your infusion day. It makes it easier for them to find your artery. It's not the same one they take blood out of, which is easier to find & get a needle in. Arteries are a little deeper & tougher to penetrate with the needle especially if they are collapsed because you don't drink enough water. I found that out the hard way at one infusion early on in my treatments. It took 7 sticks before they got it. Not fun at all. So the week before drink at least 2 qts of water/fluids (or more) a day. We should all be doing that every day cuz it helps our system flush out the bad stuff! It also helps to keep muscles from cramping up, helps with digestion, GERD & just overall well being. Hope all goes well with your infusion.
Thank you, the hydration suggestion is a great idea😊
one time the nurse made a mistake and didn’t get the needle in correctly and my husband’s arm swelled up like a balloon. Just keep an eye on your arm - check it after an hour to make sure it’s not getting swollen.
Yep - get a DMT.
Just wanted to say that I had the itchy reaction so I had to max out at the 120 rate. It made the process go from 4 hours to more like 6 or 7, which was a pain. No worries if it happens to you though, it's not scarry. I have since switched to Kesimpta, which is a game changer. It takes me literally a minute once a month. Don't have to go anywhere or see anyone. Hope you can find a new doc quickly and when you do ask about it. My old doc didn't tell me about it at all. When I found out about it and asked him he didn't have much of an answer, which was not awesome. Best of luck.
Thank you for your feedback!!
I just got an email from Ocrevus with a bunch of information - send me your email address in a private message if you would like me to forward it along.
first, sorry your neuro left without notifying you. i guess they don't understand how much we rely on them. perhaps many don't care; neuros are known for being arrogant jags. i'm in limboland so have no clue about infusion reactions, but wanted to wish you well. let us know how you get on.🤗
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