Hi
I now have a date to start and I wondered what changes people using this drug have made?
So do you wear masks, avoid crowded places, sanitise, OR some of these but just live life normally? Would you go to a work party? Gig? Etc.
Just would like some real world practical tips please as feeling like life as I know it is about to change…
Also has anyone read that this drug can give you a potentially serious liver disease?
Hi,
I too, I have recently started Kesimpta. TBH- I have not much thought about it. No one has mentioned it.
I am not talking any ‘precautions’ whatsoever.
I mean where does one stop- a bee suit?
I wasn’t on immunosuppressants during covid, but I took no ‘precautions ‘ then.
So no- nothing for me😎
Hey @Hilts can I ask if we’re a similar age? I’m 43. I love your approach and attitude. I guess I’m just wondering if I should avoid large gatherings etc.
What sensible precautions are people taking…I’m not daft but I like a night out too.
But is it maybe time for me to hang up my party shoes?
I’m the same age and I’ve no intention of hanging up party shoes just yet; although 20s double partying on the weekends and triple if there’s a bank holiday, may be too much of a stretch with walking aids nowadays. #PartyOn
So @muchthesamemuchness would you still go to a gig or an indoor party? What adjustments do you make/will you make to keep yourself safe?
I’m just so unclear about what’s allowed going forward and how I keep myself safe other than being a hermit 
Tbf I think my mosh pit going days even aided with 2 sticks are behind me now unfortunately: the staff Christmas party I think could still manage?
Remember the cold snap last year, just be careful when walking on slippery ice tbh.
Hi Teddybear. I’m not on Kesimpta so can’t add much. In general though, having MS and regardless of Treatment, I am careful in what I do. I will be careful this winter if there is a bad flu outbreak and even more so if there is a surge in Covid cases. I got Covid last year and even with antivirals ( offered to those with MS ) , it made my MS symptoms much, much worse for a few weeks ( actually couldn’t walk without help for a few days) and it was months before I recovered fully. I do avoid crowded airless places. For me , yes MS has changed my life .
I’m sorry to hear this.
Well Hi y’all.
I am of course in my ‘early thirties’…… haha- who am I kidding 53 teddy.
I think I appear to be doing differently to most.
I am just carrying on as normal, no stopping doing anything I normally do. I really feel strongly about ‘only once I’m here etc’. Knocked over by a bus tomorrow thing.
Having said that- I no longer go out for ‘pub nights’ nothing to do with the MS- just having spent the best part of 40 years ‘cane ‘ing it’ I kinda just got bored with all that and retired from such things about 6 years ago and don’t miss it at all.
But although not much help - if I was still into that of course I’d carry on.
I will continue to go on planes, trains and automobiles 
.
I have a bit of a ‘role model’ and really find him quite inspirational. Keith Richards of the stones. Knocking on for 80, after all he has done, he’s still here!!
But that is just me and my take on it.
Ultimately as the say ‘it’s up to you’
Meanwhile
3rd dose yesterday.
Tiny bit sicky and couldn’t sleep last night, but nothing else ……at all
@Hilts I’d like you to be my role model. I’m over going out out but as a manager I’m expected to show my face. Just no one really tells you what modifications you need to make and I’m feeling totally lost and quite honestly scared. I go to the office 3x a week. I’m flying to Geneva a month after starting treatment and I just don’t know what to do. Also what’s this business about potentially fatal liver infection and more exposed to risk of cancer??
I’m like you. I just want to get on with my life. Equally I’m in no rush to die or accelerate my own demise by being an idiot and getting a virus I’d otherwise have batted away.
I’m so inside my own head right now and having major panic attacks/crying a lot.I’m just utterly overwhelmed and all my neurologist said was I’m overthinking it all - well sorry I’m not medically qualified…and it’s my life.
Despite all the delays they’re not doing updated bloods/chest x-ray after telling me they’re only valid for 3 months - it’s been 5. Do I need a urine test? They’ve not said.
If you’re a control-freak like me, you will be inclined to pay far to much attention (relatively speaking) to the dwindling part of your life that feels (reassuringly) under your control, allowing you the temporary and false relief of blanking out the terrifying rest of it. That’s OK. Having MS tears up the rule book on what levers we control-freaks have under our command. That’s tough to take. Just please don’t over-weight your current concerns just because they’re the only damn thing you feel you can influence. Just because you think you can influence them doesn’t make them anywhere like as big as the elephant in the room - having MS and needing to protect yourself from MS. That’s a thought from someone who thinks she might be a bit like you, temperamentally.
Hi Teddybear . Please don’t cry or have panic attacks 
.
Have you looked at the website of the MS Trust? They have a section on Kesimpta. I noticed that they had a couple of lines and guidance on live vaccines.
For what it’s worth. Having looked at Kesimpta I think I will have a discussion with my MS nurse about moving from Avonex to the more effective Kesimpta.
I’m going to guess that it’s probably wise to take care during e.g outbreaks of flu and or Covid.
Would I use a mask - only if it was a high efficacy one ( and I do see people wearing masks now so you wouldn’t be that unusual)
Woild I use hand sanitiser - yes but just keep a small bottle in your pocket
Would I be worried about cancer - probably not. From what I’ve read Kesimpta is actually a ‘repurposed’ drug and before it’s use for MS was and is still used ( in higher doses) the treatment of some cancers
Longish duration studies seem to show there there are few serious ‘ contraindications’
Why not stop researching for a couple of days and write down a list of pros, cons and unsure/ need more info points
Hi,
I’m on a waiting list for kesimpta, which will be my first DMT.
As things stand, I have no intention of changing my life. I travel abroad for work 1-2 times a week, so plenty of time on public transport, in crowded places and so on. MS is a total pain and I have horrible thoughts about what it will mean in the future, but I have no intention of cutting things out of my life before I have to.
And I’ve not been advised to make any changes - I presume the nurses/neurologist would tell us if that were necessary.
Covid - if/when you get it, you are eligible for treatment so worth contacting your GP.
What I will do is try to get my vaccinations up to date before starting kesimpta.
I’m bracing myself for the first few kesimpta jabs and wondering how to fit that around work commitments…
Hi I’ve been on Kesimpta for around 21 months. I also take steroids for another autoimmune condition and was shielding as advised during covid.
I just live my life as normal, go to concerts , cinema and wouldn’t have any hesitation about going in a plane. I’m under a specialised ms consultant and have never been advised not to do things. My bloods are taken 6 monthly including specialised liver tests so feel they are keeping an eye on things
Thank you @Mollydolly thats really helpful and reassuring. My eldest son (9 years old) has found this message very reassuring. He’s as scared as I am bless him. Very anxious child. Trying to shield him but he’s so astute.
Glad I can help provide some reassurance. It’s so hard having a condition like this that I feel within reason we make even more of an effort not to let it stop us from living. MS certainly isn’t the end of the world, yes it can be challenging but there are good treatments nowadays which help
So I’m feeling quite annoyed I wasn’t advised to take covid and flu jab before starting treatment and also was anyone told to have a Hep B vaccination? I fly to Geneva on 17th nov and now can’t get them done before I go. The first night we are there my friend wants to go to a rooftop bar with a dance floor and it’s just hit me how my life doesn’t really suit that anymore. Probably isn’t a very good idea. But then neither is the plane or the airport.
I’m really unclear how much of our immunity is attacked in the first few months as the Kesimpta nurse suggested it was a gradual process so then I think maybe I just go and have fun as will only have had loading doses…but then I have children and if I get seriously unwell on a different land mass then what happens….
I do overthink! But does any fellow Kesimpta users have any thoughts on how I should tackle this trip?
Reason I ask about Hep B vaccination is this article My experiences with Kesimpta (ofatumumab) | MS Trust
Again, I go abroad once, sometimes twice a week. Planes, trains, crowds, you name it. My MS neurologist - who is aware of this - never once suggested this would be a problem for going on kesimpta. He’s never suggested any “precautions”.
All the DMTs tend to do things to your immune system - and as I understand it, do so for the long term. That’s the point. So unless you’re going to live under a stone for the rest of your life, you just can’t let it worry you so much.
And if you did get ill, I’m sure Swizterland has an excellent health system - if you’re going to get sick, that’s the place to do it. Flying to Geneva sounds like an excellent plan.
I know your faith has been a bit undermined by things like them not mentioning covid/flu jabs. But it looks like other people haven’t been given any particular advice, either. At some point we have to rely on
the medics to warn us if we need to take extra precautions, that’s their job. Otherwise, would you ever feel comfortable on any DMT?
Excellent point @Leonora thank you