Planning and preparation are key for my biannual Ocrevus infusions
I'm extremely grateful that a DMT is available for my PPMS
I’d spent about five years trying to figure out what was wrong with me and then treat it when I got the phone call. During that time, I’d had three surgeries to repair old injuries and had been treated for chronic Q fever. I’d also been diagnosed with multiple sclerosis (MS).
I was initially given a disease-modifying therapy (DMT) for relapsing-remitting MS. Then my diagnosis changed to primary progressive MS (PPMS), and I stopped treatment for about two years, until Ocrevus (ocrelizumab) became available.
It was a new drug at the time, and the infusion center at my neurologist’s office wasn’t able to administer it yet. The team promised to find me an infusion center.
I was at work when my phone rang. The voice on the other end said they were calling from a cancer center.
“Oh, what fresh hell is this?” I wondered aloud. I wasn’t exactly thrilled to hear the word “cancer.” The caller put two and two together and quickly clarified, “Oh, no, your neurologist contacted us, and we’ll be starting your Ocrevus infusions.”
I breathed a sigh of relief, then said, “That’s great news, but maybe you should lead with that next time!”
I’ll soon be receiving my 17th infusion, and although the process today is a bit more streamlined than it was back then, it’s still an ordeal.
17th time’s a charm
“Ordeal” probably isn’t the right word, but even if it is, it’s all relative. I’m extremely grateful that a DMT is available for PPMS. I’m thankful that it appears to have halted my disease activity for now. I’m also happy I have to take this medication only twice a year, via IV infusion.
A better way to describe the process, which always occurs on a Friday in late April or October, is probably “time-consuming,” because it requires planning and preparation. So let me walk you through my infusion process.
I start preparing about a week before an infusion by making sure my pre-infusion lab work — which is only a hepatitis B test — is scheduled. Going to the lab and waiting for results can take about an hour, so I like to do it the day before the infusion.
I can’t drive, so my wife is always involved in the planning. She drives me to the infusion center, about an hour away, and picks me up when I’m done. The entire procedure, including an hour of observation when it’s over, takes about four hours.
I like to bring a blanket and a book. My wheelchair reclines, so I don’t need to transfer to a chair, but I do have trouble going to the restroom.
An IV is started, which I prefer to be inserted in the back of my right hand. It’s my least usable limb and stays relatively still for the procedure. I don’t mind needles, and after spending years as an Army medic, plus having all of these infusions, I can point out where my best veins are. Unfortunately, though, when I’m fatigued, my hands get cold and my veins disappear, so placing the IV where I want it can sometimes be challenging.
Once that’s done, we start the pre-medication phase, which consists of IV steroids and oral diphenhydramine and acetaminophen. (After 16 infusions, I wonder if I even need those anymore. Better safe than sorry, I suppose.)
This is followed by the infusion, which lasts about three hours and actually feels like the easiest part of the procedure. The worst part of the entire process is having the tape pulled off my arm when the IV is removed.
Next is an hour of observation. And the last part is checking out, scheduling the next infusion, and driving home. I’m actually looking forward to that last part, because we usually get something to eat, and I’m going to try to convince my wife to let me cheat on my diet. We’ll see how that goes!
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Ian
Ben,
Thanks for your post.
I didn’t know you were on any therapy. Does your neuro do any tests to assess whether the drug is slowing things down? I’m not a wheelchair user - hobble about with a crutch. I’m not on any therapy, but may push for a BTK inhibitor if they are approved.
Benjamin Hofmeister
Hi Ian! My neurologist is a professor of Neurology at the medical school near the Veterans Affairs Hospital and sometimes I think he views me as his own little experiment. Instead of one simple hepatitis check before the infusion I get seven vials of blood drawn so that everything can be checked and he can send off a couple vials to have flow cytometry done on them to see exactly where my antibody markers are. So far, my B cells seem to be staying depleted and just beginning to rebound before an infusion.
Timothy
Ive just recently started my own Ocrevus infusions, After 9 years I developed multiple new enhancing lesions so my neuro advised me that the Tysabri I had been taking were no longer effective. It was sad that ended but oh well. Other that having the infusion paused for a bit and more diphenhydramine because I started to break out with a red rash on my face and neck. With that settled the rest of the infusion went just fine, With the 2nd dose of the first infusion they made sure to give me more premedication and with that the infusion went relatively fast. It really helps having the very same people give and administer the Tysabri did the Ocrevus. So they all knew and Liked me. Helps that ive helped other MS patients they had and had stuck with them when they transitioned out of a hospital annex to their own building.
Benjamin Hofmeister
I'm such a lightweight when it comes to medication that the diphenhydramine puts me to sleep and sometimes they have to wake me up when it's time to start the actual infusion.
Rick Blum
I too was on Ocrevus for a few years. But switched to Kesimpta a few years ago, which is administered every 4 weeks using a self-injector shipped to my home. Takes 5 minutes. Same basic drug, but much easier to take.
Benjamin Hofmeister
Hi Rick! I wish I could self-administer my Ms drug, but for ppms, they won't consider anything except Ocrevus. I'm hoping that when the Sub-Q injection hits the VA pharmacy that they'll let it be administered at a local Clinic.
Patti Tichenor
My husband has secondary progressive MS and is on Ocrevus. He goes next month but we have opted for the new version that is a subcutaneous injection in the stomach and is infused over 10 minutes. You do have the premeds and the post observation period but no IV with the 3-4 hour infusion. I'm sure you have heard of it but wanted to share just in case you had not and might be interested. It is OCREVUS Zunovo. He goes to UAB's Kirklin Clinic.
Benjamin Hofmeister
I get my infusion from the local veterans affairs Hospital and they haven't gotten the subcutaneous formulation in their system quite yet. I'm hoping within the next year they do and I'm hoping even more than it can be administered at one of the outpatient clinics that's only 10 minutes away from me.
Catherine
Thank you for sharing your Ocrevus routine, it is interesting to see how it differs from mine. I have been on Ocrevus in the UK since October 2020. I am a National Health Service patient, and I pay nothing for my treatment other than what I contributed through my taxes when I was working. My bloods are checked a month before the infusion is scheduled and from the amount they take (4 tubes), they must be checking for more than just hepatitis B! I believe they carry out a complete blood count, and also check liver function & immunoglobulin levels. I will ask for confirmation of this next time I go. I have to give a urine sample on the day of the infusion, to check for urinary tract infections. My blood pressure, heart rate and temperature are checked. These last three checks continue during the infusion at 30 minute intervals (an alarm goes off as a reminder!). I'm like you in that I prefer the cannula to go in my hand, normally the left. My veins are super thin, so I'm happy just for the nurse to be successful in finding somewhere for it. After that, my routine pretty much follows yours. My hospital is about 90 minutes away, and my husband drives me and waits for me. I'm due at the hospital at 8am, and so I get up at about 5.30am. We have a treat when arrive at the hospital; mine is a cappuccino and an almond croissant. The nurses in the infusion lounge look after me very well. Tea, coffee and biscuits are provided. A sandwich is also available as we approach lunch time. I am eternally grateful to our NHS for Ocrevus. I do believe it has slowed down the progress of my MS. I still have a Relapse and Remitting diagnosis, but I am not sure if that is entirely accurate anymore. I hope you manage to have a treat after your next infusion, I think you deserve it!
Benjamin Hofmeister
Actually our routines aren't that different. My hospital is about 90 minutes away too and we leave as soon as we put the kids on the school bus. The only lab I have to have done before is the Hepatitis B test, but I go the day before and get about 7 vials of blood drawn because my neurologist likes to check everything. If I could get there at exactly 8:00 then I'd be done by noon probably, but in general after the premedication, I don't start until about 10:00. I get the majority of my care at the Veterans Affairs Hospital which is taxpayer funded too. I hope they get the subcutaneous version in their Pharmacy soon so maybe it could be done locally at one of the outpatient clinics.
Di
I highly recommend Cetirizine for pretreatment instead of the IV steroids and oral diphenhydramine.
Benjamin Hofmeister
I'm going to ask my neurologist about that! One free medication instead of three sounds like a great idea to me. If they switch me to the Sub-Q injectable form of Ocrevus, I wonder if that will be an option?