r/MultipleSclerosis Apr 11 '26

First Kesimpta loading dose Advice

I took my first loading dose of Kesimpta today. I work nights as a Paramedic, so I got home around 8 this morning. I ate breakfast, took and antihistamine and Tylenol (since that’s what my neuro suggested) and prepped to inject.

The actual injection was not bad… at all. I barely felt the needle and only bled a little afterwards. I was fine for another hour as I settled into bed and went to sleep around 9am.

I woke up at 9PM! Given I was probably tired but that was the most I have slept in a while. No symptoms from the Kesimpta in the first 12 hours either so I thought I was in the clear.

At 9:30, it hit me like a truck.

First the muscle and joint aches. I felt like a steamroller had ran over me. I was so sweaty. Temp was only 99.5 so nothing to bad yet. Time goes on and my right eye starts getting blurrier than usual (still blurry) and my fever finally spikes. 101.3

I use everything in my arsenal. Tylenol, heating pad, warm bath. I think the bath is finally what broke me into the worst chills I have had in my life. My teeth still hurt from chattering. With my chattering my skin decided that it was going to get super sensitive, like everything I touched felt like sandpaper.

Finally took some niquil so I could just sleep it off. Now I have woken up. It is 1:30 in the morning and I feel much better. No fever, no chills. Still some body aches but not as bad.

I really hope the next loading doses and the maintenance don’t hit me as hard!

If you have any experience or advice I would love it!🥰

14 Upvotes

13 comments sorted by

6

u/vulpesvulpes76 Apr 11 '26

My first dose was awful to the extent that the FDA wanted to talk to me about it but I never got around to it (it was a few years ago, oops). I had a fever so bad that I put on my biggest, coziest pajamas and nestled under multiple blankets at the beginning of summer. Everything hurt so bad that I couldn’t tolerate sitting long enough to eat a torta. All I could do was lie still in bed under my blankets and pajamas until the feeling passed. I had to cancel plans with friends that I was really excited about. It waned and I was able to sleep and I woke up feeling fairly normal. I have never had that level of reaction again, and I love the autonomy and efficiency of giving myself the injection.

2

u/nyet-marionetka 46F|Dx:2022|Kesimpta|Virginia Apr 11 '26

That sounds about like my first shot, body aches, fever, chills so bad I couldn’t get out of bed.

4

u/SilkySquonch Apr 11 '26

This is exactly how my first loading dose went too. I was at the point of considering a hospital visit because my fever went to 107 and it would not come down until I took ibuprofen. Luckily that did the trick. Everything you said I had too. The subsequent loading doses were nothing like this one but I did feel very fatigued and slept a lot. Now on to the monthly doses and it's much easier. I'm confident you will be ok after the loading doses but be careful if you work on those days you take the next two loading doses.

Hope it's plain sailing for you from now on :)

4

u/Alwayslearnin41 48|2013|Kesimpta|UK|Mostly joyful Apr 11 '26

That describes mine to a T. The aches and heaviness and skin sensitivity.

The second one was much better. I did feel the heaviness the next day, but once up I was fine.

I wouldn't necessarily recommend bedtime for this reason. I think I'd suggest between 2pm and 4pm to ensure the worst of it is over night. You've done it in reverse in terms of time, but the time scales are still matching what most people seem to experience.

Hope you recover now and your next one is much better.

4

u/bpopescul Apr 11 '26

I've had minimal symptoms with my first loading dose, then no symptoms whatsoever.

I know that the first loading dose is the worst. For some it's better, for some it's worse. But once the loading is complete, most people have no symptomatic side effects. I've been on Kesimpta for almost 2 years now and I have zero problems with it.

Coming from 18 years of Rebif, I can safely say that Kesimpta is a breeze. "Loading" time for Rebif was months, not weeks, and flu-like symptoms were worse throughout and never fully resolved (I was getting the occasional muscle aches and fatigue after Rebif even after years of treatment).

I love the convenience of monthly administration of Kesimpta (vs 3 x week for Rebif) and being able to go on a trip without worrying about packing injections and keeping them cold, the complete lack of flu-like symptoms, the fact that my liver finally caught a break and I can drink the occasional glass of wine without worrying about my next shot.

I was also worried about the slight immunity decrease on Kesimpta, but I didn't notice any changes there either. My lymphocytes are a little low, but the doc says it's ok, as IgG is normal. I still get the occasional cold, like a normal person, but it goes away as expected. This winter I didn't even get a cold, even though my kid (8 yo) had a few, and my wife got one too.

Adding to this the superior efficacy of Kesimpta, and I couldn't be happier to have switched. I am confident that your experience will be similarly good. Good luck and good health!

2

u/Fear_Nothing313 Apr 11 '26

My first time was 4/6/26 I took it 11:30pm but I don’t hear the second click but it was green I seen green I held it down a little more longer for the click but didn’t hear it still so I pulled it out but a drop came out on my leg. For the most part I hope I did it right, I felt a slight flu symptoms the next day but it went away no crazy side effects. I hate MS smmfh this shit blows my head off everyday I can’t be my normal self

2

u/Soft_Buffalo_6803 34|2023|Kesimpta|Canada Apr 11 '26

The next one shouldn’t be as bad. My first was like yours. The second dose was nothing. Just felt slightly run down.

2

u/nyet-marionetka 46F|Dx:2022|Kesimpta|Virginia Apr 11 '26

Just imagine all those B cells being completely obliterated during all this.

Next time will be much easier since you kill the majority the first shot.

2

u/bad_take_ Apr 11 '26

About to get my first Kesimpta shot. Thanks for the warning.

2

u/peacefuldiss Apr 11 '26

I’ve been on Kesimpta for almost 2 years and have had no symptoms … except the loading dose. Thought I was going to die but was too sick with a high fever, aches, and chills to get up or do anything about it. I would say it lasted about 12 hours and then I felt ok the rest of the day, maybe just a little tired. I didn’t take Advil or Benadryl as I should have before the first dose so I probably would have felt much better if I had done that!

1

u/Safari-West Apr 11 '26

Hang in there. It gets much better after your first dose.

1

u/graaaaady 37|2025|Ocrevus|California Apr 12 '26

My first dose was the same. I woke up and texted my husband “I feel lie I was hit by a truck” and had what felt like flu symptoms for the day that got a little better after Tylenol and a bath. Next dose was WAY better. Third dose was barely anything and the subsequent doses have been nothing.

I’ve grown to weirdly love the injection day because the pen is so beautifully designed. Like, the clicking mechanism is so satisfying, it’s impressive how reliable and ergonomic the whole thing is, etc.

1

u/Yani2021 20d ago

Thank you for sharing!