Ocrevus 2nd dose
I was diagnosed 16 years ago and had very few issues for the first 11 of those years. I have been told I was RRMS, SPMS and PPMS from several different Neuros. It seems no one can put a finger on exactly where to classify me. I was on Copaxone for years until recently when a foot drop finally progressed to where the decision was made that Copaxone was no longer working. The foot drop that worsens when I get fatigued and has been slowly getting worse over the last four years.
My neuro talked me into Ocrevus and my first dose had no immediate side effects. I am due for my 2nd dose in about 6 weeks but I am having 2nd thoughts. It seems that my foot drop has gotten significantly worse over the last three months after my first dose of Ocrevus. Rather than slow progression it seems like it is speeding up. The neuro says it typically takes a year for the medication to show it’s full efficacy but I worry that 12 months of declination in my foot drop will be more harmful than good in the long run.
Has anyone else noticed a decline in symptoms after taking Ocrevus?
, hi! Thanks for reaching out to the community. While I can't offer any personal insight into Ocrevus, I do hope other community members see your post and can share their experiences with you. I would definitely discuss your concerns with your physician before your next dose. Hopefully, he/she is receptive and willing to fully discuss your concerns and what other options may be available to you. I don't want to assume that you haven't tried other therapies for your foot drop, but, just to be safe, I wanted to mention that some of our community members have had some luck using mirror therapy -- https://multiplesclerosis.net/living/mirror-therapy-foot-drop-rehabilitation and functional electrical stimulation -- https://multiplesclerosis.net/living-with-ms/foot-drop-electrical-stimulation. It looks like the latter might be for more severe cases of foot drop and it can be expensive, but I just wanted to share this info with you. Apologies if you're already aware of these options.
I know some of our members have found ocrevus to be a great fit for them, while others have not found it to be as effective.
In the end, you get the final say in which treatment(s) you pursue, so I hope whatever decision you make gives you peace!
Best, Erin, MultipleSclerosis.net Team Member.
Ya know? It's weird, but now that you mention it, my first two half doses of Ocrevus are really kicking my butt. Fatigue is off the charts and the brain fog is wild, and the timing can't be coincidental. On the other hand, we know that physical or mental stress causes all sorts of nasty crap. I know that my body is a weird battlefield right now, with Ocrevus tagging all my B cells with little "kill me" post-it notes and my liver doing its best to clean up all the B cell carcasses.
If that ain't physical stress, I don't know what is.
My understanding is that Copaxone works almost like a decoy, giving whatever eats our myelin something else to chaw on. I wonder if what you're experiencing is a result of the different mechanism of action?
If it's any consolation, I feel worse too. That said, I'm gonna stick with the Ocrevus for now. If I still feel this crappy in 4 months, I reserve the right to change my mind.
Good luck,! , thanks for this reply to . I don't have any personal experience with Ocrevus, so my input is limited in how helpful it is!
Best, Erin, MultipleSclerosis.net Team Member.
, Changing medications can be scary. You don't know what the short and long term effects might be. I've been on Rituxan (very similar to Ocrevus) since 2009. Things did not immediately get better. It took time to realize that MS had become very quiet and wasn't causing as much excitement or damager. Please do talk to your own neurologist and express your concerns that Ocrevus might not be doing the right thing for you. But it is a medication that takes some time to really show its effectiveness. Best wishes, Lisa, Team Member I also have Severe foot drop and was advised at the time to try Aubgio. Well it didn’t make a difference in getting any better until I tried to apply for the Bioness nerve stimulator….we’ll insurance wasn’t going to help pay for it until I was declared “Disabled “ and went on Medicare. My nurse at Medicare fought for me and I finally got the Bioness L300 GO 🙏. This device helps my tremendously. I just recently got back from seeing an “MS Specialist “ that was referred by my neurologist, and I knew right from the beginning what he was going to say….Have you considered trying Ocrevus? I told him yes, but I have the virus for PML and he said that the chances of contracting PLM from Ocrevus is slim…well with my luck, I don’t want to take that chance and will stick with Aubagio until they come up with something that can repair our Myelin. The way I see it, MS sucks and every day I curse it, but I carry on 😓 even if it takes my three times as long to do something. I wish all you Warriors all the best in this fight against Multiple Sclerosis.
I am glad you continued to push for the Bioness L300 GO and that the nurse was willing to advocate for you,
. That must make a huge difference in your safety and mobility. I wish it wasn't such a battle to get one. Thanks for chiming in here. Wishing you the best. - Lori (Team Member)
