Starting Kesimpta as first treatment for RRMS

Hi all, I was just looking for a bit of background and advice if possible? I am due to start on my first MS treatment of Kesimpta since my diagnosis a few months ago and was just wondering how others got on with this drug? Did anyone experience many side effects at all? How are you finding the drug now for those that have been on it a while? Many thanks in advance :slightly_smiling_face:

Hi I started Kesimpta back in April this year and am currently on my 3rd chest infection. Unfortunately when I took the first injection I had an infection lurking in the background and it completely knocked my immune system right off. If I had of had my bloods checked for infection markers then the first injection would never have been taken, hindsight and all that! Bloods taken yesterday and no infection markers present so I am taking Kesimpta injection tomorrow, better with it than without. After the first injection I got the shakes (horrible) and then was very sick but that was expected.
Good luck with your injection.

1 Like

Hello, thanks for the Kesimpta heads up, I should be starting on this one this week.
It’s probably good idea then to shield for a while after if you will be susceptible to infection from now on; I’ve got up coming surgery too --dependant on the current NHS crisis of course.
Best regards Kesimptarians,
JP

I’ve been on Kesimpta for 18 months. I had bad shivers after the first dose, so make time to go to bed and sleep it off. The next 2 doses were better, then all good and no side effects. Good luck

2 Likes

Thank you Lulu! Do you think it’s helping with your overall MS symptoms at all? I just took my first dose last night and woke up in the night with horrible flu-like aches and pains but this morning it seems to be gradually subsiding which is good!

Thanks Phil, are you finding the Kesimpta is helping with your symptoms at all?

Short answer, no. I see Kesimpta as prevention against future damage/relapses. So still have some of original symptoms as pseudo relapses if unwell, tired etc

Just had 1st zap of Kesimpta today: I think I understand why the drugs company quadrupled price of Ofatumumab --so much packaging and plastic!

2nd Kesimpta shot this week, the feverish after feeling reminds me of Avonex once-a-week.
I still kept my old injector pen: shame I can’t use it to shoot myself with Ofatumumab drug --it seems a bit senseless to dispose of the use-once SensoReady Kesimpta pen.

I also had my 2nd shot this Thursday - how are you finding it all in all?

Hi Gem,
I too had the next day acheness feeling, much like Avonex.
As Phil said, Kesimpta is just meant to stop further relapses as all DMDs are supposed to do and not reverse disability --if it does though, it’s a bonus.
Hope this DMD lasts and won’t wane after almost a decade.
Best,
JP

When you say shield, is that initially or for always? I’m about to start soon and I’m really not sure I understand all the ramifications of doing so.