Moving from Tysabri to Gilenya
Hey all,
I’ve been on Tysabri since March 2020 and have been fortunate to have no relapses but my MS team told me a couple of days ago that I need to change to Gilenya due to a change in my JC status.
I had my last Tysabri infusion earlier today and the neuro nurses seemed very confused about why I wasn’t being placed on Ocrevus instead. Has anyone been through changing from Tysabri to Gilenya, and, if so, what was your experience?
I’ve read a few pieces of research and it seems like Gilenya is quite an old fashioned DMD. I guess I’m feeling a little frustrated and a bit powerless; when it came to choosing my first DMD I felt like it was a very collaborative process between myself and my MS team but this time I feel like I’ve been a little fobbed off.
First off I totally understand how you feel. Honestly, I feel powerless and aggravated a lot when it come to things relating to my MS. I am sorry you have to change meds. That in itself can be super overwhelming. I recently in the last 8 months or so switched from Tysabri to Ocrevus. It went really well with very few issues. Not having to have an infusion once a month has been so freeing. One of the biggest things that having MS has taught me is how to be your own advocate. If you are not comfortable switching to Gilenya then don't. At the end of the day, it affects you. Not your Doctor. Ask your doctor a lot of questions. Even write them down before your appointment. It is their responsibility to make sure you are fully informed on your disease, medication, and what that medication is going to do to your body. Some questions I asked when I switched meds: Do you feel like this is my best medication option? What are other options available? Why do you feel like your recommendation is better than these other options? How many of your patients have had issues with the medication you are recommending? Information can be a great thing. Use valid websites to do research on the medication options that your doctor gives you, which it sounds like you have. Bring up your questions about the recommendation doc is giving you. There is a reason they call it "practicing" medicine. They cannot be 100% sure of everything all the time. You are in charge of what drugs do or don't go into your body. You can do this!
Big thanks for your comment. These questions are really helpful, as I definitely struggle with being my own advocate. I think I’ve partly felt so powerless because my MS nurse gave me a call and just told I would be taking Gilenya from now on and didn’t really open up a dialogue. I’m going to get in contact with them today and try to explore what other options might be available to me!