Ocrevus disappointing up to now

I had my first dose and will have 2nd this week. I feel weaker now than in the past. I was on rituxan every 6 months and it was GREAT! After my infusion I had no fatigue, not as much weakness.

With the Ocrevus I'm not feeling any difference and not better. I'm praying after my the 2nd half of my first infusion I will be feeling better.

22 Replies

  • Sorry to hear this, AMR67! I personally, do not have any experience with this DMT, but I know some of our members do. DEGU - "Don't Ever Give Up!"

  • Thanks and it's not in my DNA to give up!

    Staying in prayer and faith.

  • AMR67 so far from what I have read, everyone has reacted differently. Prayer fully things will be different when you have the second dose. Keep us posted please, blessings Jimeka 🦋 🌈

  • Will do and thank you for the words of encouragement.

  • jimeka I don't know if you read this yet, but I just read that Canada just approved Ocrevus for RRMS, but, made no mention of PPMS in its statement. I also do not know how Europe might be influenced by Canadian decisions but I thought of you when I read the article.

  • bavery207 thank you. Still waiting on approval here in the uk. How are you doing? Blessings Jimeka 🦋 🌈

  • jimeka I get my 2nd 1/2 dose tomorrow(Wed.) so we shall see...last time I was exhausted for a few days, I expect some of the same this time, but who knows! My favorite local music festival is this coming weekend and I usually am there Fri.-Sun. but I may not have the energy to tolerate much this year. But that is OK. Last year I was wondering if I would even be able to attend this year so anything will be appreciated. Hang in there my friend.

  • bavery207 i hope and pray that this second infusion Is less exhausting and by the weekend you are able to attend at least one day of the music festival. Blessings Jimeka 🦋 🌈

  • AMR67, I'm not that familiar with either drug, but I'm surprised you haven't felt as well on the Ocrevus as you did on the Rituxan. Maybe it will take longer to notice improvement with the Ocrevus? I pray that is so...and that you'll be feeling better soon. It must be a disappointment as I'm sure your expectations were high. Thank you for sharing your experience with it. Please keep us updated following your upcoming infusion. 💕

  • It seems that I've read of a few people feeling much weaker after the first half dose and even the second half, but with improvement following soon after. I pray that your improvement become obvious very soon.

  • Thank you I will keep you posted.

  • AMR67, I'm sorry that you weren't told not to expect improvements yet, it is still WAY too early to be looking for changes or evaluating effect. It's also common to feel worse initially after infusion, but that passes. I was completely wiped out for a good week after each of the two initial infusions, but then returned to my baseline. I've heard from some people who have had it take longer, some less. It's now been 2 months since I had my first dose and I've started to experience some really good days mixed in and am encouraged. My doctors, however, say that for the most part 3 months is about the earliest they would expect to notice much effect, and that they see improvements continuing through year 2 and beyond. So be patient and keep the faith, the best should be yet to come. I'm including a link to an excellent video presentation and Q&A by Dr. Timothy Vollmer that I hope you'll take the time to watch. Dr. Vollmer is one of the leading experts on Ocrevus and was involved in the trials and is very highly regarded. Best of luck to you, and please keep us posted on how you're doing. 🍀

  • Thank you for the encouraging feedback.

  • I watched the video link and I did learn a great deal and my expectations are now coming in line. I am just praying to at least get back to my normal state.

  • dianekjs I just watched the video link re: Ocrevus and learned quite a lot, so thank you. I'm due for my second infusion next week, and feel more positive about the future and my disability.

  • Ilia1392, you are very welcome, I’m glad it was helpful. Wishing you the best.

  • I am sitting here getting my first dose.

    Wishing you the best!

  • Praying all goes well for you, SlmHarris. 💕

  • Thank You! Hopefully things will start looking up for both of us.

    God Bless

  • I pray you are soon feeling better.

  • Just finished my first infusion Friday and am totally exhausted and feel like I've regressed a bit. Hoping to come through on the other side a little better. Trying to stay focused and keep pushing forward. Luck to us both!!

  • Amen my friend. I'm so exhausted I had to ask my job to allow me to work part time. I'm also weaker in my left foot. My left foot drop is worse post infusion.

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