Last reply 1 year ago
Need feedback from any1 taking Ocrevus i

Going to be starting my 1st infusion of Ocrevus this coming Friday. . nd im kinda of nervous wanting to hear from any1 thats is taking it or maybe had only had one ful treatment . . ?

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1 year ago

I’m new here, and joined since I was diagnosed last year and I am on Ocrevus. I have only had my first dose, and I was also a bit anxious before I began, after reading all sorts of things and because it was a new experience. I decided on Ocrevus with my doctor after discussing some of my particulars (RRMS undiagnosed for several years but confirmed with optic neuritis and then enough MRI evidence to want to treat with something aggressive, so this is my first treatment).

I was totally unsure how it would go. I barely slept the night before (this is one of my bad habits, but it came from anxiety). For me, one of the big issues was with needles, because I get reactions and have passed out before (I started passing out getting my blood work done to clear me for MS treatment options).

I got a very good infusion nurse who was able to place it and talk me through a lot. Once the infusion began after the pre-infusion phase, the only infusion reaction I had was some mild itching in my ears and on my face. The nurse took things gradually, and was very responsive, and after the itching happened, she stopped the infusion to monitor me but everything resumed after about 20 minutes. I felt tired from the antihistamine, but otherwise good when I left and went home.

My second half of my starter dose two weeks later I had another amazing nurse who was gentle, helpful, and reassuring. She got the IV in SO fast. This session, for me, was the best boring but good boring. No reaction at all. No itching. My body had already begun adapting. The first time, whatever happens, the second half should be better in some way. Even if it means only that you are prepared for the experience. I slept okay after the second session, and I wasn’t even anxious going in aside from the needle part but my nurse was, as I said, amazing.

Now, of course, all experiences are different, but in my time before my dose, I read a lot about people’s experiences, and there was a range. Some people felt tired. Other people got itchy. Some people had stronger reactions.

One thing that helps me is to be your own advocate. I talked very openly with my nurses about my concerns and my needs, my preference for IV placement, needing water, just don’t be afraid to consult them or ask for anything that might help. And if you have any kind of reaction, they will likely slow the whole process down or pause it, but let them help.

Since my first dose a couple of months ago, I’ve been feeling good. I’m glad to not have to return for more frequent infusions. I’m not going to somehow forget that I have MS, but the gaps help me to just live and I’m glad to have had a good experience so far. Next up is blood tests to make sure everything is okay, and next dose. After that, likely the year one scans, and fingers crossed things stay stable.

All the best to you on your Ocrevus treatment sessions! Remember to bring yourself snacks, something to read, stuff to drink, whatever will keep you comfortable. I had the comfiest clothes and a big roomy sweater to relax in and I slept a little on both occasions because the antihistamine made me so sleepy.

1 year ago

Since I just joined, and Friday has come to an end, I suppose my response is a bit late, but I hope it’s helpful for you and others who might peek in here.

1 year ago

Well its good nd relieving to know your reaction to it wasnt bad not to say mine may not be but im hopeful nd confident im wont be to much different hopefully. But thank you for sharing your experience nd advise i appreciate it!

1 year ago

I had my two half infusions in June and my second full one in December. Each time infusion reactions, so they had to lower speed of infusion and it took quite a while. You get pre-meds and if necessary steroids and benadryl during infusion. The first days after the two half infusions I felt knocked out, migraine, muscle pain, weakness; after the second half it got better. The second full infusions hit me harder, gave me like 3 weeks of increased fatigue, weakness. Yes, and I could a cold immediatly after infusion, seems that O lowers immune systeme and you are more likely to get infections. Some people report that their symtoms improved after O, I can´t tell that. My neuro says it takes at least 6 – 12 months to see if it works.

1 year ago

Well i hope it works for us all nd that your reactions ease up. Thats my fear that im goin to feel like crapp alot nd get sick but i hope my reaction isnt bad nd if it is it atleast not too [email protected]@daybyday

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