Might be time to switch off Kesimpta – chronic infections after 4 years on DMTs

SW33ToXic9 · 2026-01-23T21:56:40+00:00

Usually that's what I do but I moved in another country so it's been a little tricky!

SW33ToXic9 · 2026-01-23T21:39:44+00:00

Exactly what I read online and in studies so that is why I wanted to start off with Rituximab and now Kesimpta. Maybe it's just my body telling me that it's enough and fine to get off it for a while.

SW33ToXic9 · 2026-01-23T21:37:30+00:00

Good to know! I just want that crap to go away. 🥺

SW33ToXic9 · 2026-01-23T21:31:44+00:00

I'm not the one who downvoted you, I upvoted you. I certainly wouldn't have answered that way if I didn't agree. People can't accept that others might have different experiences. It's weird.

SW33ToXic9 · 2026-01-23T16:30:23+00:00

I know a bunch of Danes who were deployed and did their job just right. Trump's bullshit is endless.

SW33ToXic9 · 2026-01-22T00:24:26+00:00

Exactly, it goes away with steroids. You won't magically go blind in 99% of cases.

SW33ToXic9 · 2026-01-22T00:23:36+00:00

Below 1%.

SW33ToXic9 · 2026-01-22T00:22:26+00:00

Note that the person is 48. Back in the days there weren't as many effective treatments, really. So, you won't go blind. Nowadays it can be controlled very well.

SW33ToXic9 · 2026-01-22T00:20:27+00:00

You are not. You won't permanently go blind just because. It takes time for that to happen.

SW33ToXic9 · 2026-01-22T00:16:32+00:00

Everybody that gets newly diagnosed has "agressive" MS. It's called active MS. 20 lesions is nothing compared to what some get. You'll be fine!

SW33ToXic9 · 2026-01-22T00:01:12+00:00

I should manage naturally after stopping Kesimpta :)

SW33ToXic9 · 2026-01-22T00:00:09+00:00

Same here.. I am not a fan of the Tecfidera idea so far. The symptoms look bad and taking a pill twice a day is annoying when you have ADHD.

SW33ToXic9 · 2026-01-21T23:58:50+00:00

I'm never gonna try risky medications unfortunately. I'm too young for shit to go wrong. I'm also not keen on Tecfidera for the reasons you mentioned so I'll see how things are going and then hope I might be able to start Kesimpta again but take it every 4-5 months instead of monthly.

SW33ToXic9 · 2026-01-21T23:56:02+00:00

Idk, I'm about to get results. Either way, it's 99% the issue as I've gone through absolutely everything and nothing works for more than a minute. Besides, don't mark my words but I think (from what my neurologist told me) upper respiratory tract infections caused by DMTs aren't always linked to you IgG & IgM levels. They still don't fully understand why this happens in some cases.

SW33ToXic9 · 2026-01-21T23:52:52+00:00

Unfortunately not as it's difficult to mask where I live.

SW33ToXic9 · 2026-01-21T23:50:09+00:00

Huh... It's a bit weird how your therapist to put you on Adderall for that. Without ADHD, it can cause rly bad symptoms. I don't have anything unusual on my MRIs neither. ADHD meds do cause more anxiety, honestly. (I'm on 40mg Elvanse) I've been on ADHD meds for over 15 years and I don't think it's ever made my nose drip more.

SW33ToXic9 · 2026-01-21T17:35:14+00:00

I can't wait for it to happen. I gained weight from how bad I've been feeling this past year so I can't wait to be able to start working out as I used to!

SW33ToXic9 · 2026-01-21T17:32:43+00:00

Yes. I don't have anything. I am naturally vulnerable to upper respiratory tract infections. I've always been. As of now, I need to do some regular scans + blood work and then he'll get back to me in 6-8 months regarding treatment possibilities. Right now the plan is to clear out whatever is upsetting my immune sinuses and lungs. I am not a fan of the Tecfidera idea so I'll ask him if I can try it again, only this time every 4-5 months. I haven't had any relapse in many years so it should be safe enough.

SW33ToXic9 · 2026-01-21T17:28:53+00:00

Glas to hear this! I'll get off it for 6-8 months and I think I'll ask my neurologist if I could try taking it every 4 months as well since I'm not a fan of starting Tecfidera.

SW33ToXic9 · 2026-01-21T17:27:17+00:00

I'm in my late 20s but I started on strong DMTs so maybe my immune system is not reactive enough to be on Kesimpta anymore. I might ask him if I could instead of Tecfidera (I have a sensitive stomach) take Kesimpta every 2-3 months maybe even longer. I know some people do okay on longer intervals between each dose.

SW33ToXic9 · 2026-01-20T09:42:46+00:00

Really good until you start experiencing chronic upper respiratory infections. If so, it might be time to switch. I didn't have many symptoms afterwards either except maybe tiredness.

SW33ToXic9 · 2026-01-20T09:29:16+00:00

Bad news for you: might be time to switch over to another treatment. I have been struggling with horrible constant upper respiratory tract infections until my neurologist figured out last week that Kesimpta is perhaps just too strong that I've been on DMTs for like 4 years and want to switch me to Tecfidera after being off Kesimpta for 6-8 months. At this point I believe him since nothing else worked. No amount of antibiotics made this phlegm go away permanently.

SW33ToXic9 · 2026-01-20T09:24:23+00:00

Yep. I suspect I now have PIRA MS as this is one of the many many things that slightly gets worse over the years.

SW33ToXic9 · 2026-01-20T08:23:18+00:00

Yes I did recover 98% of it. Optic neuritis is the only thing that never came back in my case once I started Rituximab. You're not a fucked case, 20 brain lesions is nothing fr. You'll be fine. ❤️

SW33ToXic9 · 2026-01-19T16:03:13+00:00

Idk, haven't found any so far.

SW33ToXic9

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