Orvecus: Anyone else on Orcrevus and have... - My MSAA Community

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Mistery profile image
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Anyone else on Orcrevus and have you seen any results yet?

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Mistery profile image
Mistery
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6 Replies
cnichols profile image
cnichols

I did first two half doses, no issues, feel great. Before switching to Ocrevus, I did its counterpart Rituxan, felt great on that too.

dianekjs profile image
dianekjs

I started it just about 3 months ago and the past 8 days or so have been the best I've had in a very long time. My walking is better, my legs don't hurt nearly as much, and I have more energy. In other words, I am functioning again - have actually been quite productive the past few days, and wasn't sure I ever would be again.

The trick is not to get my hopes up too much - how cruel it would be to have a brief taste of feeling semi-normal again only to have it yanked away. In sum, it's too soon to make any conclusive assessments, but I am very encouraged and cautiously optimistic.

I should note that I just had a new MRI a week ago that showed a new lesion on my brain, so I wasn't happy about that. However, my doctors (and I) suspect that it occurred prior to starting Ocrevus, and likely explains why I was getting so much worse before we started. Also, regarding the infusions themselves, I had infusion reactions both times that made for long days. After each infusion I felt really lousy for a week or so, but both those issues were more than worth it for the new improvements I'm seeing now. Have you started Ocrevus, or just considering it?

Sggmcswain profile image
Sggmcswain in reply to dianekjs

Glad to hear you are doing better. I am to start at the end of the month. Biggest thing is my balance. Changing from Tysabri. Any words of advice?

dianekjs profile image
dianekjs in reply to Sggmcswain

Just be prepared to give it time to start to show effect, I've seen many comments from people in the large FB groups who were disappointed when they didn't experience fast improvement. I was told to expect it to be at least 3 months and possibly considerably longer before changes might be noticed. It was a little sooner than that for me, though. Also know that around 30% of trial participants had mild to moderate infusion reactions, but that they're almost always easily managed and no big deal. Some people feel worse before they start to feel better, so incorporate as much flexibility into your calendar following infusions as you can. I needed a week to recuperate each time but many feel fine right away, maybe more fatigued for a day or two.

Other tips are to have a ride arranged, you may not be able to drive afterwards (I wasn't), take a blanket if your infusion center doesn't provide them (mine does but many apparently don't), and take something to eat and drink, and a book and/or iPad or similar in case you are not knocked flat by the IV Benadryl like I was. You should do just fine. Good luck and please let us know how it goes when the time comes. :-)

Yooper profile image
Yooper

Mistery: It's been almost 2 months since my 2nd dose. Took me several weeks to get back to where I was and keep hoping for improvement. God's Peace

Sggmcswain profile image
Sggmcswain

Thank you for the response, I do not drive anymore (another thing lost). I have been praying to be a success case. I am diagnosed with RRMS. I have learned that my maternal grandmother was undiagnosed. My brother-in-law just said - she was in her 70s when she died and got around better than you. Wow. I am trying!

Guess this turned out to be rant - sorry