In November I attended a Dr visit after being informed I had a couple new lesions on my Cervical and Thoracic Spine. During the visit my Dr informed me I would need to start Ocrevus instead Tecfidera after being on it for 3mths. Labs were drawn and faxed to office Nov 26th. I was advised they would be calling me or Ocrevus team. I have been patiently waiting so I decided to call the office so awaiting a return call. I notice after reading articles on Ocrevus a IGG lab should be drawn and several others before starting the med. When I 1st received a call after MRI, my Dr was considering this is an urgent matter. Hopefully to hear from them before my next appt on the 18th. On the Tecfidera my symptoms haven’t gotten better or worse so just wondering if I should continue on with this and wait until my next MRI before approaching another med since Ocrevus haven’t started. Next MRI will be done in March or April. Pls give me your opinion. Thank you!
Change from Tecfidera to Ocrevus - My MSAA Community
Change from Tecfidera to Ocrevus
Last April, after having been on Tecfidera since it received FDA approval in 2014, my neuro told me the same thing. He said that he checked my MRIs from 2014 with those taken in 2020 and that there were so many new lesions on both my brain and cord (most of mine are on the cord anyway) that he felt I had broken through the Tecfidera and it was no longer helpful. He recommended Ocrevus. When I read about the side effects, particularly breast and other cancers, I was very concerned, especially because I had liver cancer at age 19. I researched Ocrevus and all of the other SPMS meds, including Ziposia and Mayzent, and decided to go with the Ocrevus. I did not have an IgG screen before the first infusion, which I couldn't get before August because of the COVID, but my former neurologist who did diagnose and treat me prior to my moving across the country stated that he did that as a matter of routine with Ocrevus. I plan to ask my neuro about it before my next infusion. I would call your neuro and ask him what is taking so long. I felt that by delaying for 4 months due to COVID I lost valuable time when the Ocrevus could have been working since it was evident from the MRIs that the Tecfidera was no longer working. Good luck!
This information was so helpful and I did put a call in to the Neurologist on today and emailed. No return call on today so hopefully I will hear from them on tomorrow. Thank you so much!
Re "...checked my MRIs from 2014 with those taken in 2020 and that there were so many new lesions on both my brain and cord...". Surely new lesions would have been picked up in comparisons made between the 2020 scan and other MRIs done since 2014?
Yes, I'm sure. This was a new neuro to whom I had switched my care when my former neuro kept telling me that everything was stable and my symptoms were getting worse. And on top of that, he wouldn't deal with the nerve issue behind my knee but instead sent me to a pain dr. I have to say that the pain dr. has really helped me but I couldn't get my former neuro to even talk to me about it. I kept getting his nurse. I finally asked him if he understood why I was upset and offered him this analogy: "Suppose you get sued for medical malpractice. I defend you. I don't let you know what's going on. As the trial approaches, you call me with a bunch of questions but you only get as far as my legal assistant, until you specifically request to speak to me, and then you get as far as my paralegal. I never call you back. In fact, you don't see me until the trial, and then I take 15 minutes to prepare you to testify while I'm backing out of the room. The jury returns with a verdict, but you don't understand it and when you call to ask about it, the farthest you can get is my paralegal. You don't get satisfactory answers from him, so you try and get me. I have my legal assistant call you and tell you that everything's OK and not to worry. How long do you think you would continue to retain me as your lawyer?"
Still awaiting a call from the Neuro. Will reach out to the office on Monday. Thanks for everything!
Very interesting please keep us informed how this goes
I will keep you all posted.
I was on Tecfidera and switched to Ocrevus you have to wait 28 days for Tecfidera to wash out of your body b4 u can start Ocrevus
u should have ur dr fill out the paperwork so that u can get an Ocrevus patient navigator they help with setting up infusions, insurance questions, payments if insurance wont pay, and anything related to Ocrevus. the paperwork is on their website
Will do. Really appreciate it.
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