Has anyone gotten worse since starting Ocrevus?

[raegun67]

I got worse on Ocrevus. I walked into the center to get my first two half doses. Six months later, I had to walk in using a walker. Fast forward another six months, I can't walk. I now have a motorized wheelchair.

[greaterexp]

I'm sorry to hear this. How does your doctor explain this?

[rjoneslaw]

Sorry to hear that

I have gotten better

What has ur dr said about this?

[hairbrain4]

Sorry to hear that. I hope your doctor has an explaination for you. I'm on Ocrevus & have gotten better.

[kdali]

Wow, that does not sound like what you were expecting in a year, and I’m so sorry to hear this!

I’m worse but also had a baby so that could be to blame (wondering if maybe it should have protected me anyway and I’ve made a bad decision by staying on it). If I fail this drug I’m going to scream, but also, there are a few more drugs now than when I started it.

Have you been offered a medication change or know what you will choose next? What did your follow up MRIs look like? Were you stable or improving at all before getting worse?

I hope you get some answers and a plan soon.

[JSSimp]

So sorry to hear this. I was diagnosed in March and med to start would be Tecfidera in the event COVID-19 hit hard in my area so med was delayed. Scheduled to start this mth. Pls give me some reviews on medication. Really Really concerns about the Side Effects and starting med.

[bxrmom in reply to JSSimp]

I switched to Tecfidera about 3 years ago from Copaxone because I was running out of spots to do my injections (had been doing it daily since 2006 then started 3 times a week when the came out). I have been doing well on Tecfidera. Some get an upset stomach in the beginning. For the flushing in the beginning, I took a low dose aspirin for a month or so and then stopped it. I always try to take it with a meal so I don't get an upset stomach. My white cell numbers did begin to drop but currently they are going back up.

Hope this helps. Keep us updated!

[JSSimp in reply to bxrmom]

Thank you so much! I will take that approach. Also notice JCV Antibody positive in Feb. lab results for JCV DNA is negative this mth. Awaiting for my Dr to discuss the difference from going to a positive to a negative. Thanks again!

[bxrmom in reply to JSSimp]

I am positive for JCV Antibody but my numbers are pretty low so my Neuro said I didn't need to switch to something else. That is unique for sure going from positive to negative! Keep us updated when you can!

[carolek572 CommunityAmbassador]

Have you discussed this with your doctor? Perhaps Ocrevus is not doing its intended job with you. I have done very well with Ocrevus, and my mri shows no 'ms' progression, according to my doctor. Keep Smiling

[bxrmom]

Sorry you are having such a bad experience with Ocrevus, I have heard so many people say they were having great results. Does your neuro know why you are not doing so good on it? Keep us updated. There are many meds out there now that you can try. Keep us updated.

[Gma06]

Yes! Walking is worse, balance issues, fatigue worsened, and now I have a chronic cough. I have asked before to go back to Plegridy, but neuro said no. I have appointment tomorrow, and I am going to ask again.

[erash]

I’ve worsened or progressed but I blame MS not Ocrevus. I’m currently deferring my next dose til the pandemic improves. If things deteriorate in the interim, I will restart. In the mean time, I’m maximizing healthy lifestyle behaviors (especially nutrition)

[IFwczs in reply to erash]

Changing my diet was truly the best thing for me. You are doing the right thing. I have bullied my way into the next Ocrevus infusion this Saturday.

[IFwczs]

It's extremely interesting you said that. I have been on Ocrevus for two years (4 full doses). I feel I have definitely gotten worse.

My infusion is coming up. Not sure if I am going to have it. I keep telling my husband every day I am going to stop Ocrevus, but it seems my right leg was lifting a little after an infusion, and now it's just dragging.

So my neurologist (he is old school and never says anything) told me when he first recommended Ocrevus that it's the only MS DMT that slows down disability. Of course, we don't know how our MS would have progressed without Ocrevus. No one knows. Do you have RRMS or progressive?

[raegun67 in reply to IFwczs]

Yes. One of the two. I have gone from having a diagnosis of RRMS in 2014 to a diagnosis PPMS in 2019 back to RRMS last week. I was taken off Aubagio in March of 2019 and started Ocrevus May 2019 after I received the PPMS diagnosis. Now, I am back on Aubagio, which was tolerated well. My new neurologist has also explained why she believes I have RRMS and not PPMS.

[IFwczs in reply to raegun67]

You are lucky you have a diagnosis, at least. My neurologist diagnosed me with RRMS. Not sure why. I slipped and fell on sheer ice in the middle of the night one time, and he decided it was a relapse. I tried telling him that I have progressive MS, but it's useless. Doesn't make a difference now anyway.

[raegun67 in reply to IFwczs]

I hope you get her to listen you. Always remember, it's called practicing medicine. There is a good reason for that; or, at least, that's been my experience.

[IFwczs in reply to raegun67]

It doesn't really matter on Ocrevus what you have. But I agree - doctors are practicing medicine, we are the ones living with MS.

[pamgarner]

I think talk to dr of course,but what does you mri say?any new lesions?you can have new symptoms without new lesions and you can. have new lesions without symptoms.i do know i do need it more often than 6 months.i feel it.you can have a blood test to see if it is still active in your symptoms.good luck!