ocrevus cessation

has anyone stopped taking ocrevus?what happened?

[kdali]

Yes, 3 times 🤣 1) pregnant 2) switched to Kesimpta and relapsed 3) nothing for 6mo, and I had 2 scans during that time. Did you recently get your infusion?

[Hidden in reply to kdali]

Was scheduled to get infusion Friday, but had to cancel too many problems with insurance, and am not going to leave family with hundreds of thousands I. Medical debt

[dianekjs in reply to Hidden]

Have you talked to Genentech about their patients assistance programs? They help many patients get the drug at No or low cost, they’re pretty liberal. If your main post question is asking if a delayed infusion will cause problems, there’s usually a couple of months cushion, most people’s B cells don’t start to repopulate before 8-9 months, sometimes longer. Stopping an MS DMD long term is a very bad idea and could risk your family far more than figuring out how to lower costs or get assistance. One new lesion in the wrong place can cause new symptoms and devastating disability in a heartbeat. If you want to take care of them, take care of yourself first. Ocrevus is extremely effective at inhibiting the development of new lesions.

[kdali in reply to Hidden]

Oh no, I'm sorry! I would say you have some time to get it sorted. If you have made it past 2 years, your B cells may not come back for a while anyway.

[erash]

Stopped O 2 yrs ago because symptoms progressing anyway and concerned covid. I’m still waiting for my B cells to come back. My MS continues to progress but not necessarily more rapidly. And I’m progressive MS anyway. No relapses or MRI changes x diagnosis @ 2008.

[hairbrain4]

I stopped O a year ago. Waited 6 months & started on Vumerity. No problems & no changes in my MRI.

[NorasMom]

I stopped it after the first 2 half-doses because of the side effects I was having. Took 6-9 months before I felt normal.

[dianekjs]

Yes, I was switched to a different DMD. It’s been over 18 months since my last Ocrevus infusion and my B cells are still at zero. Otherwise my MRIs have been stable.

[Kitsey]

As said earlier, please contact Genentech. I did it years ago and paid nothing. I’m on Medicare now so it’s not an issue. Best of luck!

[JTZES]

My doctor is more concerned about my labs results but O has kept me new lesion free for 2 years. Has others have said contact the manufacturer and apply for their financial aid program. I am on it and when they heard that I was disabled on a limited income they approved me right away. I never see anything regarding billing.

[Tazmanian]

Try everything you can good luck

[positiveness]

I stopped taking Ocrevus see after two years and went on a more convenient DMT called Kesimpta. This one I can administer myself by giving a shot every month. Same results I believe. I still use a wheelchair for longer distances and still use my walker inside the house. I am also still doing my exercises. Perhaps when re-mylination occurs, I will do better. Take care

[IFwczs]

Same as erash , my PPMS symptoms, including gait, began progresding very rapidly on Ocrevus. I took it last time in February 2021, and never looked back. I am not on any DMTs now.

[Hollithia]

I stopped Ocrevus for about 6 months and my B cell count increased. My neurologist put me back on and I had another infusion recently. No other changes.