Hi I’ve just seen my neurologist and her recommendation was Kesimpta based on lifestyle and young children. Please could people share their experiences? I was
massively against this but am persuaded. I think someone referred to it as a crude tool and it hugely put my off.
Hi, we must be related 
I too have just been diagnosed with 20 years of symptoms and have been offered
Kesimpta, ponvoroy or plegridy. Tbh the ‘choice’ is driving me mad.
How am I to know which is best😡 the clinic tell me it’s my choice! Arrg , I know that BUT…….
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Quite honestly the side effects alone put me off all of them but as I have young children the neuro felt the kesimpta was the ‘safest’ option. It’s so hard to know and I’m pretty against self-injecting but I need to still be able to be mum. I don’t really want to take anything in truth but scared of what might happen if I don’t. What if my luck runs out? Etc.
It’s so hard when the new lesions were so small (less than 1mm each), just 3 and all the others are inactive and there’s not many.
So I’ll take something because I’m scared but that’s the only reason. Not because I think clinically it’s necessary yet. I guess it’s not knowing when it could turn that persuades me.
Good luck with your choice and sorry I can’t offer any useful insights - let me know how you get on x
What did you go for?
Sorry for delay, but I do find this site difficult to navigate and have been away etc etc.
I too have gone for Kesimpta- I noted it is about £7000 a shot, I figured I am worth it - surprise I was offered anything apart from maybe paracetamol:joy:.
I too ,like you am a mum of teenagers🤬and I feel that I just want to give it my best shot and not get any worse for them. I don’t know how many lesions I have or even if I am currently’expanding’ don’t have any appointments until next year, BUT it almost doesn’t matter- let’s give it a shot. I start next week- delayed it as I have been away.
Work is an absolute nightmare at the moment- let’s just say I work with the public (of all sorts) for a large state run service and they are, or appear to be ‘confused’ what to do with an immunosuppressed worker- clowns. Managment really are as thick as the proverbial.
Anyway- if you’ve started let me know how goes x
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I’ve already had the initial first three shots. I’m due the fourth this week but I think I’ll leave it till next as have been struck down with Covid-19 this weekend.
I’ve been good and just shielding at home all this time but if another family member has the lergy, being immunosuppressed, not much you can do to avoid infection.
Best regards,
JP
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I hope you feel better
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How it was? 
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The treatment has got rid of my constant back ache which is good, but unfortunately I won’t be able to do fourth injection this week; Covid virus just doesn’t want to move on.
I suppose the reason being, Kesimpta has already wiped out my immune system.
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Hi Y’all
Well, it’s done. My first Kesimpta jab Monday just gone. I think it would fair to say I’ve had worse hangovers😂. I was shocked how okay it was. You read all this stuff and think aaarrrggg, it’s gonna be bad- but no. It 48 hours since it went in- I’ve had a slight temperature, touch of nausea, headache and what I will politely phrase ‘gut rot’- but I’ve been out n about done stuff etc- I had wiped my diary so everything was optional.
One thing I did notice was huge itching all over body- but I love scratching- so not bothersome.
One seriously weird thing- within an hour of taking the jab- my leg and arm stopped buzzing,been buzzing for months recently, but had them for years. Later in the day and today by walking just seems more solid.
2 things I’m wondering
- How on earth can something work so quick- or are a lot of my symptoms’in my head’- not bothered if they are, they are still symptoms.
- I thought kesimpta didn’t do anything to past and current body music, just (hopes to) stop new stuff.
Now for 3 more- next one might kill me😂- so maybe jumping the positivity gun. But feeling pretty good this evening-, waiting for the bubble to burst, or someone to say ‘the side effects start on day 5😂’
Cautiously optimistic
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Hello fellow Kesimptarians (Ofatumumabers), hope all is well.
I took shot no.4 the other day, albeit one week late and I didn’t feel any next day after effects.
I’m convinced by how fast-acting the drug is, it’s all cleared up my constant back-ache every morning.
After my experience on Lemtrada previously, I promised myself never to sign up for anymore DMD treatments and would try to tackle MS just me versus it:
well four years of no DMT I just about managed, until this year.
Herewith my fantastical analogy: those pesky T-cells are the real baddies, B-cells are its foot soldiers sent in to attack --although they could have actually helped knock off Covid-19 virus a few weeks back, a lot quicker.
Now Kesimpta’s role is to suppress the B-cells so they do less harm on your CNS --or so it says on the tin.
Best regards,
JP
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How are you getting on @Hilts ?
I’ve just messaged the specialist nurse to get the ball rolling on the jabs.
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Well Greeting folks.
Update from the front line- well sort of 
my sofa.
Jab 2 update.
Did this Monday just gone and ,well, nothing to report😂. LOL - feel like I’ve not done it…….
No after burn at all!
BUT (there is always one) I got that symptom relief again, legs /walking felt much more solid, less ‘jubbly’ and left arm leg stopped buzzing. I got it after the first one, but symptoms came back about 2 days before 2nd jab.
What is that all about?? I am pleased that this happens, but (another one) I am thinking psychosomatic OR my lesions are actually active and Kesimpta has marched on in and given them a slap?? Anyone out there in the know??
Anyway- next update after 3rd shot next week.
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Hi,
Good, see my ‘progress’ 
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Amazing @Hilts! Can I ask, are you shielding during this initial phase or going about your business?
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Absolutely NOT!
No one mentioned it, not that I’d listen anyway .
I’ve never been one to listen to all that ‘stay safe’ stuff.Only once we are here etc.
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Love this!
I want to thank you all on this thread! I think you have saved me from myself, truly.
On the yellow fever thing I finally spoke to someone medical who actually wanted to give a damn and the advice was pretty much as per another thread. Don’t take the vaccine and if you travel somewhere, where it exists, don’t catch it!
Thanks for all the support. A great bunch here! 
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