I am due to start Kesimpta very soon, and I am so worried about the loading doses due to ppl saying they have felt horrendous. I am reading horror stories on line and its freaked me out to the point where I dont want to go ahead with it. Is it really as awful as ppl say? I can cope with a headache and a sore leg like my MS nurse said I will maybe get, but im starting to think it’s much more than this. So worried and stressed out by this that woudn’t be suprised if that in itself gives me flare up. I guess im just looking to hear about positive kesimpta as opposed to the horror stories.
I’m not on Kesimpta so can’t say anything about the particular side effects. However! I think all DMTs bring some side effects and some people find them difficult to deal with/ they vary in intensity from person to person.
I’ve been on Avonex for around 18 years and do experience its well known side effects ( feeling a bit rubbish for 1-2 days). Some of the potential side effects of Avonex are pretty scary , potentially very serious and some people do have to find alternatives.
One of the many sods of MS is that basically we have a choice between experiencing side effects of a DMT or letting MS do it’s worst ( having seen how my Aunt fared in the days before DMTs I know that I far far prefer using a DMT than facing untreated MS).
With Avonex and I’m sure with all DMTs you get carefully monitored for side effects including frequent blood tests until it’s clear that you aren’t experiencing any damaging side effects ( for my first injections I was urged to ask my girlfriend- now my wife - to stay with me for 24 hours or more in case I experienced any life threatening reactions).
Sorry to say, this is the world of MS! There is no ‘get out of jail’ card and no easy option . On the more positive side, Kesimpta is one of the most effective treatments and if you are one of the ones that react badly to Kesimpta then just ask to change to another DMT.
Basically my advice is : try it, it could be of enormous benefit. If after trying it you find the side effects too much then just change to another
1 Like
Hiya sophieanne87,
Please don’t read to much into this, I started kesimpta in October and the 3 rd loading dose gave me cold like symptoms but after a couple of days felt fine. Personally take paracetamol, have the injection n the evening then sleep it off. We are all different, My MS has given me loads of food and medication allergies to the extent of making me tachycardic but have to say Ive been ok on kesimpta and I’m now actually feeling like it’s helping me . There’s a page on Facebook for kesimpta uk, depending on what area of the uk you live will depend on follow up. In my area they do blood tests every 6 months, will be reviewed by the MS nurses every 3 months and I recently had a baseline MRI completed.
2 Likes
Hi! I just took my first dose today, and was feeling nervous about the side effects (having two kiddos under 5 doesn’t much allow for feeling rubbish 
), and so far so good….! Injection was 6hrs ago and yes, I have a headache which came on an hour or so ago but it’s not terrible. I’ve taken some paracetamol and come to bed hoping that all will be back to normal in the morning 
. Certainly not a horror story, but of course everyone is different.
Good luck on your journey, whatever you decide to do Xx
Thankyou and yes you are right x
Thankyou very much x
You’re very welcome and hope you get on well with what you decide to take. x
Hello @sophieanne87
The Kesimpta loading doses were fine for me. This DMT did wonders for my constant back ache. I always looked forward to the next dose. I liked this DMD but, alas it didn’t like me in the end, hey-ho.
I was offered a lower efficacy DMT as an alternative but, knowing my luck with unwanted side-effects, I thought I’d much prefer not to continue tyvm. Hope this one works well for you.
Good luck,
JP
1 Like