Changing DMTs
Hi all, new to the forum. I was dx in 2020, week 1 of lockdown. Was initially on Tecfidera (some 6 months after DX) but the gastro side effects after 6 weeks were too much and I was taken off it in September 2020. I was left without treatment until March of 2021 and then put on Tysabri infusions initially and then two injections in about 2022.
I have no progression and my neuro says I have 'active' MS with inflammation and I want to try Ocrevus or Kesimpta but he says I'll have to leave a 6 week gap before starting those and he can't guarantee that I won't have progression. He also says he can't guarantee I will feel any better.
I just don't feel that they're interested in helping me feel better, it's pretty much 'well, you have MS-what do you expect?'
Has anyone had similar experiences? Has Tysabri made anyone feel worse?
Thanks
James
Good morning. I have taken Tysabri fro 4 years. I cannot say it ever made me feel worse, but I also can’t say that it has made me feel better. I understand it is more of a preventative measure to prevent future attacks. But it is frustrating to not see improvement in my symptoms. I will say, I have never had any negative side effects surrounding my IV infusions. I have never had any new lesions while on Tysabri—also a good result. But impossible to know whether I would have had no lesions even without it. So confusing and frustrating.
@Criscross21 thanks for that, I feel like I'm just in limbo and every stress and hassle just adds to the mix!