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Autoimmune disease

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Original poster

Kesimpta for MS

5 replies

mondaytosunday · 26/04/2023 15:53

My 17 year old daughter has just had her suspected MS confirmed snd she will start treatment after her A levels (which start next week 😬)!
The neurologist has recommended three different drugs, but favours Kesimpta (Tysabi and Mavenclad being the other two). Anyone had any experience? I know it's a relatively recently approved medicine. It seems to have the least amount of side effects, easy to self administer and be effective, but I'd like to hear any real life experiences. Thanks.

OP posts:

CharlieBoo · 15/06/2023 18:38

Hi, my brother is just about to start this treatment. Did your dd take it in the end? If so, how is she getting on. Thank you

Original poster

mondaytosunday · 02/07/2023 23:02

Hi @CharlieBoo. Not yet. She just finished her A levels a couple weeks ago and she needed some vaccinations (covid, pneumococcal - which they could have told us about weeks ago), and there has to be a four week wait. So hopefully in a month she will be started! How is your brother doing?

OP posts:

CharlieBoo · 05/07/2023 21:32

Hi thanks so much for replying @mondaytosunday! my brother is due to start at the end of July, he’s a bit disappointed as he’s managed for so long with nothing, but his latest CT showed changes on the brain scan, so they want to keep him as good as he is for as long as possible. He was dx at 25 with RR MS, and at the time it was a huge shock for all of us, but let me reassure you, he’s been so well, has always worked full time, only had a couple of relapses that were bad enough he needed a few days off from work. His mobility is great, he just suffers with fatigue. Good luck and best wishes for your dd, there is so much more treatment now than there was 20 years ago.

Original poster

mondaytosunday · 09/07/2023 12:31

The doctor was very pro Kesimpta, the other choice was tysabri but the risk (however small) of PML, plus the fact it's a transfusion and she'll be going off to university after next year, put her off it. It didn't seem to be any more effective anyway.

OP posts:

banjaxxed · 09/07/2023 20:14

My DH started Kesimpta about 2 months ago as his tecfidera wasn't working properly.

The first jab he had side effects about 5 hours after the jab. It came on REALLY quickly and it was like really strong flu type symptoms - uncontrollable shivering and was cold and aches. Then he became a bit feverish but they had gone by the morning.

He now takes the injection at night so any symptoms would be overnight. He hasn't had any symptoms of note after that first dose.

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