How long do you stay on your DMT?
I'm looking for some advice, experience, or just some regular conversation about the length of time you would/should stay on the same DMT.
I'm a 52 year old female that has been on Tysabri for nearly 13 years. I have not had any progression or changes to my MRI's during this time. I haven't had an exacerbation in at least 5 years.
In the 13 years, I've had 4 ports. The current one works when it wants to and is very annoying.
I'm wondering, because I've been stable for so long, do I need to continue with this torture every 4 weeks? Has anyone been on Tysabri this long or longer? What are your experiences? Anyone stop their DMT after a long period of stability and have experiences they would share?
I appreciate the conversation!
Hi,
!
I am glad Tysabri has been working well for you for so long, but I understand why the issues with your port would get wearisome. I haven't found any conversations on this site about port struggles/failures, but there may be members who have experienced something similar to your situation and I hope they see your post and chime in here.
I do know we have had community members on Tysabri for upwards of six years and I wanted to share an article from one of our former contributors on his experience with Tysabri. Devin is no longer active on this site, so, unfortunately, you can't ask him any questions. Still, I wanted to share the piece in case you can glean some helpful information from it -- https://multiplesclerosis.net/living-with-ms/infusion-iv-treatment. I know it's not exactly going to help with your specific question about the port, either, so apologies for that.
Going off a DMT is always a weighty and personal decision, so I would definitely keep dialoguing with your doctor if this is a route you choose to pursue.
I do hope you get more helpful insights from members that have been where you are and can offer more useful advice!
Best, Erin, Team Member.
Thank you! I did read his message and I wish he was still active!
I hope others can share their experiences as well!
Blessings, Jen
thanks for asking such a great question! It's one that I think we all wonder about when managing MS. My personal guess is that the answer is different for each person - I know, not the direct, black and white answer that we really want. But my personal opinion is that MS is so different in each of us, and it shifts even through different seasons of our own lives that it's hard to have one standard through all of that. I like to have regular conversations with my neurologist about what is the best treatment plan for me in this season of life and based on my disease progression/stabilization. That answer was different when I was first diagnosed, then changed when i was pregnant and, who knows, may be different years from now. That said, I wanted to share a discussion with that that was specifically about Tysabri here in our community. You can check out the article if you're interested, and be sure to check out the comments below as well, as that's where the conversations happens with all our community members about the topic. I hope this is helpful!
https://multiplesclerosis.net/living-with-ms/the-before-and-after-of-a-tysabri-infusion
Best
Alene (team member)
Excellent referral! He certainly has some of the exact things I experience before, during, and after each infusion! Who knew!
I know we are all experience such an individualized journey, it's so difficult to compare notes!
Thank you for your reply!
Blessings, Jen
