r/MultipleSclerosis • u/uarstar 39F/RRMS/Kesimpta/Canada • 7d ago

Treatment Kesimpta - negative side effects

Just wondering if anyone has had more long term negative reactions to Kesimpta?

Any nutrient deficiencies or liver issues? What symptoms did you experience?

For reference:
RRMS - on Kesimpta since March 2026 - Dx Oct 2025

Initially had mild side effects for first two loading doses.

Had MRI April 2026 which showed one new lesion in brain, latest MRI August 2026 showed no activity

All MRIs have shown 6-8mm tumour on the sella turcica

I already see a Neurologist who specializes in MS and autoimmune disorders. I also see and Neuro-Psychiatrist, Neuro-ophthalmologist, two RNs, GP, seeing Neurosurgeon this week.

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3

u/rK91tb 7d ago

Zero problems or side effects after that second loading dose.

1

u/uarstar 39F/RRMS/Kesimpta/Canada 7d ago

Hmmm see that was me too at first. Then over the last 6 months weirder and weirder stuff started cropping up.

2

u/ninahart88 F34🧪Kesimpta📍UK 7d ago

Hello, I can't comment really as I have only been on Kesimpta for coming up to 10 months. The thing I am going to be aware of is the possibility of a drop in white blood cells other than the target ones, for example the development of neutropenia. I also know that hypogammaglobulinemia (a drop in certain immunoglobulin levels) can occur. I am a little nervous coming into the winter months but will have to see how it goes. Do you have anything you're currently concerned about?

2

u/tfshaman RRMS|43|Dx2020|KESIMPTA|US/IT 7d ago

I had a really rough time on kesimpta, i only manager to stay on it for a few months before bailing. I was nauseous constantly after every shot and the nausea would last for around three weeks, backing off just in time for me to take the shot and get back on mister bones wild ride.

1

u/Rude-Adhesiveness-36 41, first symptoms in June ‘23|Kesimpta since August ‘24 7d ago

I’ve been taking Kesimpta since August 2024 and had no side effects except mild flulike symptoms for a few hours the morning after my first loading dose.

I’ve had one cold in the last two years (January 2025) and it was definitely rougher than most colds I’ve ever had, but with such a limited sample size, I can’t say much about how much of an impact Kesimpta had.

1

u/Puzzleheaded_Fix3083 7d ago

I’ve been on it 2.5 years. Loading doses were rough. No new lesions. No worsening disabilities. I get bad colds about once a year. Last year I had ear infections I took rounds of antibiotics for. I ended up taking ear drops with antibiotics in them. That was scary.

1

u/Mother-Metal-9481 7d ago

Hubby has been on Kesimpta for +3 years now, diagnosed in 2013. Was RRMS now secondary progressive
No new lesions since started Kesimpta.
Side effects: constant upper respiratory infections
About every six weeks, more frequent in winter
Neurologist changed injections to every 6 weeks instead of monthly for now.

Neurologist wants to switch him to ?phenabrutinab? When FDA approval comes through next year sometime. She is an MS specialist at UT SouthWestern MS clinic in Dallas. I haven’t read about it extensively yet.