Hi all...wish me luck with the first 1/2 of the first Ocrevus Infusion today! I'll post later how it went.
I'm nervous about how it will go especially since I'll be stuck at the infusion center for so many hours. I'm not happy about that. My Tysabri infusions took a lot less time.
I was having a panic attack about my medical insurance yesterday because as luck would have it, my former employer converted their benefits management to a third party company and I hadn't gotten a bill for Cobra as I should have. I called this morning and everything checked out thankfully so I'm good to go.
I'm also not happy that we have freezing fog and its only 27 degrees so far this morning. That means black ice on the roads and I need to drive about 16 miles to get to the infusion center. Sigh.
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Raingrrl
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Finally home and exhausted. The only negative was that my heart rate was a little high so my nurse had to call my neuro before releasing me. He said I could go home because it was probably the solumedrol given pre-med that caused it. The Benedryl they gave me pre-med made me really sleepy or it could have been the less than 3 hours sleep last night. I'm going to see if I can fall asleep for a little while.
My neuro has been switching his patients from Tysabri to Ocrevus and a lot go to the same infusion center I do. My nurse said I was one of the few not to have any reaction during the infusion. Both she and the pharmacist talked to me before starting about the various infusion reactions they've seen and what to do if I experience any of them. I'm hoping that I continue not to see any reaction since I'm now home...especially since its a Friday.
Raingrrl - congratulations on completing your first 1/2 dose! I'm impressed you were able to drive yourself, I most definitely wouldn't have been able to, but they gave me lots of additional meds mid-way because of infusion reactions (both times). Get some rest now and take it real easy over the weekend. Stay well-hydrated, but no need to force fluids. Pamper yourself a little. It took me a week to get back to baseline but I've heard from others that felt fine pretty much right away. Thanks for the report, and keep us posted.
you will be just fine and you will not be bored ..some people will talk to you and of course the nurses ..take a book or a book with things to do in it ...i have had the first two and no difference and not feeling anything from it and will have another one this week my 6 month full dose ..i think it is great no more shots for i have had shots since onset of my ms in 2004 for a short time was on texsidera but i could keep taking for not for my body...it was a pill that was great also...take care and enjoy the wonders of this new drug...good luck ..
Hi twooldcrows ... I already had the infusion at the infusion center I've been going to for 5 years getting Tysabri infusions. I know how to keep myself occupied. Ocrevus is more of an ordeal because of the number of hours you are stuck there compared to Tysabri. Its a cancer center and patients don't tend to talk to each other because many are very ill and just want to get their treatment done. I do talk to the nurses but mostly read.
Update: It took until early evening for my heart rate to go back to normal. I'll have to remember this for the next dose since apparently I'll be given the same pre-meds each time. I'm experiencing some dizziness today but I'm not sure if that is Ocrevus related or just the fact that I haven't slept well the last couple of nights. I'm just going to hang around my house today.
Thank you Yooper ! Tysabri worked really well for me so its kind of a leap of faith to try Ocrevus. Especially since despite the marketing hype that it is some kind of miracle drug with a good safety profile, it is not without risk.
Update: 3 full days following first 1/2 Ocrevus dose. I seem to be doing ok with this dose of Ocrevus. Its kind of hard to know because the mild issues I'm experiencing are things I experience off and on no matter what. Today I've had some mild dizziness and last night was another night of off and on insomnia. My vision is blurry and the neuropathy in my lower legs has been more noticible than usual but both of these symptoms sometimes happen when I've had poor sleep for multiple days.
Its really frustrating to not be able to tell if this is just my usual MS shenanigans or if it has anything to do with Ocrevus. This is typical for me though.
Raingrrl I, through the first few weeks seem to have an initial increase of my "normal" MS issues. Then I start settling down and doing much better so I have deemed it the Ocrevus 🎢. Even though MS is one all it's own. Ya know the really scary one that goes upside down and all that mess! However I seem to have a big plummet at first and then it's all just normal and even have practly "good" peroids where I am gaining ground in the strenght and energy aspects. Be8ng able to start Physical and Aquatic therapy. Being able to make it through my grocery trips without it ruining my day in its entirety. I am not quite down as far as I was after the initial first two doses. I think its trying to hang around a bit longer though. I am actually looking forward to make even more gains in therapy once I restart. I have had to put it on hold while I "recover" from the infusion. Hopefully I will be able to make that call to start back up this week for next.
Thanks for sharing your experience Allen5280 ! I'm so curious to see what happens after the my next 1/2 dose and after the full dose. I'm continuing to have stronger than usual neuropathy in my lower legs but I'm just taking my gabapentin and ignoring it as much as possible. Ignoring things is one of my favorite coping techniques. ; )
Started going to the Y a few months ago to try and build some stamina and some strength. I think that will continue to help me gauge the affects of Ocrevus. I know just from my track record that I can't go to the Y 2 days in a row. I also know how much I can push myself and how many errands I can run at one time before I'm wrestling the never-ending fatigue. Any negative changes to that I will blame on Ocrevus even though with MS it can be a multitude of things.
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Experience with First Round of Ocrevus
First Ocrevus Infusion 
First infusion 
