June 10, 2017
Anyone who has started the new drug, Ocrevus. I just took the 2nd dose. The start up is divided in 2 weeks. IV INFUSION it is 6 hours-at infusion. Between the pre meds and actual medication, hen waiting 1 hour to check for side effects.
So fs I had increased spasticity for a few days and increased weakness. Nothing too terrible.The worst part is being there for 6 hours. I get very uncomfortable. sitting too long. Chair not good for me.
I hope this works for me.
please join if you started.
June 10, 2017
Hi traveling1! I know that Ocrevus is pretty new within the MS community, so I can't say how many of our members have tried it yet. Here is one person's story about Ocrevus that you may find interesting -- https://multiplesclerosis.net/living-with-ms/ocrevus-patients-story/comment-page-1/#comments. I hope this medication works well for you. I do know that infusion days can be challenging. You may want to find things that can help you pass the time. I know some of our members will read or bring audio books on Ipods or MP3s so they can listen and relax while in the infusion chair. Some people find online games like Candy Crush or Angry Birds as a good way to fill the time. It may take some time to find what helps you get through infusion days, but I do hope you find it less uncomfortable as time goes on. You can let the nurses know that you are experiencing discomfort. They may be able to provide extra pillows, heating pads, or something else to help combat the discomfort a little. Best of luck and please keep us posted on how you are doing, if you feel comfortable doing so. Best, Erin, MultipleSclerosis.net Team Member.
March 15, 2020
She my Neuro says that as long as they are not making me worse, I should stay with this treatment. I never did tell her that my Muscle Spasms dissapeared while on I forgot the name of that medicine. I could not stay on it because I finally became JC virus positive. They actually did not completely go away just were less noticeable then they are now. Nothing seems to help so I will stay on this until something good comes out with a lot less scary side effects. My dream drug would be a no side effect Novantrone which put me into an almost remission where I could go go go instead of today which is a no no no
June 12, 2017
I just had my first dose 4 days ago. I think it went well. I am extremely tired these past few days. Next dose in 1 and 1/2 weeks.
June 12, 2017
Thank you for sharing, nikkimarie06! I am glad your first dose went well. I hope you start feeling less fatigued very soon and that your next appointment goes well, too. Best, Erin, MultipleSclerosis.net Team Member.
June 14, 2019
I started ocrevus last Aug.2018. I am at the point that I can still walk, but a trip across my house to the Kitchen and back is about all I can manage. If I want to go for a "stroll" 'round the neighborhood I have to use my wheelchair. Before I started the ocrevus I was in the ER about every couple of months. But no trips since April so I am satisfied that it is living up to the claims. I have had no side effects at all. So I say so far so good.
June 18, 2019
@Poppa57, we are so glad to know that you're tolerating Ocrevus well and haven't visited the ER since April. Wishing you continued success with the new treatment! Warmly, Kim, moderator
March 12, 2020
I go on March 24th for next infusion. It will be my 3 year mark. I have no idea if it is working for me or not. I do not tolerate any of the other DMT’s. I have had MS since 1997. Was diagnosed with RRMS i now have worsening RRMS. i have been in a wheelchair since ‘99 when I had been on Avonex. My body is allergic to Inter Feron. Who knew? SMH i became bedridden for 6 months. I did find my husband of 19+ years on the Internet. Oh did I say I was 24 when diagnosed? 47 now
March 14, 2020
Hi @AngelGirlie! I hope your next infusion goes smoothly! I find it interesting that you can't tell if the treatments are helping or not. Have you discussed this with your physician? I guess if your symptoms aren't worsening, that's a good sign. And I am glad you found your husband online! And that was back in the days when the internet was a lot younger and quite a bit slower! Nothing like it is today! Again, I hope your infusion goes well and that the treatments at least stall the progression of your MS! Thanks for joining the conversation! Best, Erin, MultipleSclerosis.net Team Member.