Kesimpta question: Hello. I am new on this... - My MSAA Community

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Kesimpta question

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13 Replies

Hello. I am new on this site. I'm a long haul MSer-25 years and counting. I have just started Kesimpta and would very much appreciate any feedback from anyone who is taking it. Did my first shot last week and it was a doozie. Got hit with everything - sweats, chills, fever, muscle pain and weakness. I am wondering what others experienced when beginning this medication. Many thanks for any info you can offer.

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Helpmeup
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13 Replies
jimeka profile image
jimeka

Hi and welcome. I am not on that drug but if you look to the right of your post other members have posted about it, blessings Jimeka 😊

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Helpmeup in reply to jimeka

Hi, and thank you! Since I am new here, I of course noticed the posts you mentioned after I posted. I have some learning to do as to how this site works. Hopefully I will figure it out! Appreciate you letting me know about the posts.

Royjr profile image
Royjr

The same things happened when I did my first starter (loader) dose but after that I had no issues or symptoms. If you look further you’ll see that a lot of people have the chills, weakness etc after doing their first dose.

Helpmeup profile image
Helpmeup in reply to Royjr

Thanks for sharing. I had heard about the first dose side effects, but I didn't think it would be quite as bad as I got hit with. Lasted a full 24 hours. Also, instructions had said no need to pre-medicate with Advil/Tylenol, but I did need the Tylenol to get the fever down. I take my second dose in two days, and hope my reaction is minimal as yours was.

Royjr profile image
Royjr in reply to Helpmeup

I did take Tylenol before my 2nd dose just to be on the safe side and I didn’t have any issues. I didn’t take anything before the 3rd or my 1st monthly dose. I felt just st fine. Good luck and I hope you feel better next dose.

Helpmeup profile image
Helpmeup in reply to Royjr

Hi royjr. A quick update. As you suggested, I took my second dose with a couple of Tylenol and had no side effects except a minor headache. What a relief! I am very hopeful that Kesimpta will work well for me. Sounds like it's working for you!

kdali profile image
kdali

There's a great Kesimpta group on Facebook!

Helpmeup profile image
Helpmeup in reply to kdali

Thank you!

jorrell profile image
jorrell

I had symptoms of MS after the beast of all flus on Jan1 2000. Diagnosed roughly 14 years ago, copaxone did nothing for me, so they changed to trintellix. That worked until the symptoms were killing me, yes, after that, as a male I know what it is like to have a hot flash while in a meeting... the windows fogged!I have been on Ocrevus for 4 to 5 years now with no problems except losing your immune system for a while. So far, I have outlived one Doctor, and went through three MS Doctor changes. On trintellix and Ocrevus, I have had zero new/active lesions. Welcome aboard!

Corran731 profile image
Corran731

I have had no issues yet with Kesimpta however I had previously been on Ocrevus which works similarly and I did have some reactions with it … especially the premeds. So that may have helped when I started out. I hope the rest of your loading doses go smoothly. I echo what others have said, tylenol helps as does making sure you are hydrated. And the FB group is a great resource.

Helpmeup profile image
Helpmeup in reply to Corran731

Hi. Just a quick update on my second dose. Took it on Friday evening with two Tylenol and other than a minor headache, all went smoothly. I am relieved and now can look forward to my third dose. I am very hopeful about the Kesimpta. After years on Tecfidera (which was great), and Vumerity (which did not work for me), I am ready for a new start. Hope Kesimpta is working well for you!

mrsmike9 profile image
mrsmike9

Wow! That sounds like me after Covid shots! So sorry!

Helpmeup profile image
Helpmeup

Hello again! Just wanted to share and update you all on my second dose of Kesimpta. Took it yesterday with two Tylenol and had no side effects except for a bit of a headache. Yaay! I was so nervous about taking it after feeling so awful after my first dose, but now I have two doses behind me and I am hopeful and actually looking forward to my third dose next week! Thanks again for the advice and encouragement!

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