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Looking for feedback of people that had to switch from one medication to another

So I have been diagnosed with MS 2 and half years ago. Right after, my doctor recommended to start treatment with Natalizumab and so I did. But right now after this period of almost 3 years taking it, honestly I feel like my body is at its limit, it's almost like it's rejecting the medication. Two months ago after my last MRI i had terrific news, the size of my brain lesions significantly decreased. But now that I'm facing those new complications, I'm a little lost honestly. I really don't know how to move on. Im sorry for any possible misspellings, English is not my first language. Any kind of support is appreciated! And thanks in advance for anyone that's reads this.

  1. Hi, !

    First off, I am so sorry you are experiencing possible complications with your MS medication. Secondly, don't ever feel the need to apologize for any misspellings that may occur, as English isn't your first language. As an American, I am constantly amazed (and more than a little humbled) by the amount of people who speak and/or write more than one language at any level of proficiency. We Americans could take a cue from our global neighbors and try to learn more languages to fluency.

    Okay, all that said, if you feel your medication is not working well with your body anymore, you first step is to talk to your doctor about this. It's (unfortunately) not unusual for one's body to just reach its limit with any given medication, even if it appears to be helping with lesions. Some medications used to treat MS (including Natalizumab) are just so strong and the human body just reaches a tipping point and can't endure anymore. And you know your body best. If it's not handling the medication well anymore, it may be time to look at other options.

    I know it's incredibly disheartening to feel like a treatment is *finally* working, only to realize that a change might be needed. The good news is that there are other treatments that can be tried.

    Please keep talking to your doctor and feel free to ask for testing to be done to make sure Natalizumab isn't negatively impacting your overall health. That said, whether the lab work comes back negative or positive, only you can decide whether or not to continue with Natalizumab. There's definite pros and cons to be weighed, but you deserve to have the highest quality of life possible and that's something to consider.

    Good luck and please know you are not alone in this! Many of our community members have had to switch meds for all kinds of reasons (including their bodies no longer responding well to those medications). I thought you might find this article (and the many member comments at the end of the piece) interesting -- https://multiplesclerosis.net/living-with-ms/dmts-wish-known. While it doesn't speak directly about your medication, it covers the topic of DMTs and changing treatments. I hope it's helpful for you.

    Best, Erin, Team Member.

    1. Wow, i'm stunned, you are so educated and cordial.
      Thanks for such a, careful, technical, clarifying and heartwarming message!!!
      It really really really helped me.
      I'll trust more in the signs my body is trying to send me and keep my communication with my doctor on point, even if it seems difficult at times.
      I'll try to talk to him about how natalizumab can be impacting in my health and also ask for tests to check it, like you said. Again, thank you so much. Your answer was so complete, I'm so grateful 🙏

      1. we're so glad that the community and conversation here has been helpful for. Being reminded that you're not alone and talking with someone who just "gets it" is always so helpful
        Best
        Alene (team member)

    2. , I have been on 4 different medicines since I was diagnosed in 2008. The reasons to change were varied but absolutely all were done after a clear conversation about my concerns and needs was had with my MS doctor. MS care should revolve around shared decision making and if you feel that a change might be good for you, then by all means your doctor should listen to your concerns.
      There are over 20 drugs approved to treat MS, and we have that many for a very good reason. We know everyone responds differently or perhaps develops an intolerance to a drug. It is really a luxury to have this many options. So please talk to your neurologist about what else might be available for your treatment.
      As for communication skills, I envy anyone who has more than one language they can use to share ideas and questions. Sadly, I only know one!
      good luck with this next step, Laura, MS.net moderator, DX '08

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