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6 month update on Kesimpta (symptoms, side-effects, and how it's helped me manage MS) | charlie | YouTubeToText
YouTube Transcript: 6 month update on Kesimpta (symptoms, side-effects, and how it's helped me manage MS)
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This video provides a six-month personal update on the experience of using CMTA (a disease-modifying therapy for Multiple Sclerosis), highlighting its ease of use, positive impact on physical and mental well-being, and manageable side effects.
hello everyone um welcome back to my
Channel or welcome to my channel I
wanted to do a really quick video today
doing a six Monon update on cmta which
is the drug that I take to manage my
multiple sclerosis or Ms um which is
what I usually refer to it as CA is the
DMT that I take to manage it it's the
disease managing therapy I think that's
what DMT stands for or disease managing
treatment I'm not sure which one of
but it's the drug that I take to manage
my Ms it's an immunosuppressant so what
it does is it suppresses your immune
cells so it basically suppresses your
immune system and makes it less active
because the way that Ms works is you
have an overactive immune system and so
it kind of goes a bit crazy and then
instead of fighting off infections it
attacks your brain your spinal cord and
your optic nerves I I think I don't know
if your optic nerve is part of your
brain but that's what MS basically is
it's a autoimmune disease and it's not
great it's not pretty but it can be well
controlled there's so many drugs that
control it I have R are and there such
as relapsing remitting and the drugs
help you slow down any progression um
and kind of Hal the disease as well as
possible a lot of things you can do to
help with the disease diet and all of
that good stuff but the drugs are a huge
thing that have really helped me um not
just physically mentally as well I know
that before I went on the drug because
it took me a few months to actually
almost like get the courage to go on the
drug and once I did it really really
helped me mentally because I was so
stressed trying to control it with just
diet and yeah once I got on the drug it
felt like a huge weight was lifted off
my shoulders and I felt like I could
breathe again I could relax again I
could enjoy myself again because I felt
like I had um almost like something else
vouching for me and like on my side so
this is the box it comes in I have this
in my room because yesterday I went to
pick up some new uh pens so the way that
could seem to work is it's literally
just a pre-filled pen and you hold it
down onto your skin so onto your stomach
your arms or your thighs and you hold it
down and then it clicks and then the
liquid releases and then a little green
vial fills up once the G green VI is
like full it clicks again then you wait
a few seconds and then you undo it or
you lift it off your leg and that's it
it's once a month injection so it's
super super easy and that's one of the
reasons why I chose it when I went to go
on a drug I kind of had all of them
available to me um cuz I had really like
I had relapsed really soon to when I
wanted to go on the drug and so they're
kind of like whichever one you want you
can go on I had full pick of all of them
and the nurse I was working with at the
time recommended consed to me purely
because I was very set on the fact that
I wasn't going to be in the UK for long
and I was going to be moving to
Australia and I was going to be
traveling I was going to be doing things
and I wasn't going to be like sitting
Stills she was like okay so infusions
won't work and I really wanted something
that wasn't that was going to go
straight into my skin because I didn't
want something to kind of have to go for
my gut first and and I just wanted to
yeah have it into my skin straight away
and CA seemed like the best option it's
the first one I've been on so I haven't
been on like I know a lot of people have
had a lot of experience with other drugs
and yeah I haven't it's the only one
I've been on and it's the only drug I've
ever really been on in my life as well
so I was really nervous about taking it
which is why these videos were so
helpful for me to see what other
people's experiences were like because
it's really overwhelming when you're
about to put something into your body
which is as serious as like an
immunosuppressant like it's a pretty
serious drug to take um and so it was
really nice hearing other people's
experiences of it so yeah first things
first I want to preface this by saying
that I haven't had an MRI checkup one of
the reasons again the ca was really good
for my lifestyle was because I again
knew that I wasn't going to be in the UK
for long I wanted to go traveling I
wanted to go to Australia which is where
I am now um and so yeah it was a really
like low monitoring drug like I didn't
have to be monitored on it too much
which um was really good for me and my
lifestyle choices so yeah another reason
why I chose this one
yeah so for anyone who doesn't know s is
a monthly injection so you take it once
a month which is super super easy and I
do it it takes maybe 15 seconds and then
I get on with the rest of my day and
everything's fine it's yeah it's just so
nice being able to do it once a month
and then being able to forget about it
the rest of the month and then if I have
any trips planned or something I always
just plan them around that date so
mine's on the 30th so I always make sure
that I'm not away on the 30th although
last month I was it was New Year's Eve I
was in Sydney um but again it wasn't a
big deal you can really easily travel
with it so I just have a little flask
needs to be refrigerated at all times so
much information I have like a little
flask with an ice pack um in it that I
got from Amazon and it's meant to be
really good for medication has a little
thermometer in it and yeah it just stays
at about 2° 3° for like 36 hours it's a
really really good flas and it's really
easy to travel with I don't let it go
through the machine like the X-ray
machine I just kind of put it through
manually and I've never had any problems
with it the only problem I've ever had
with it was one one time they didn't let
me take my thermometer on and I had like
a breakdown about it because you can't
take Mercury onto a plane but the
thermometer I had was one that
specifically didn't have mercury in it
and so he took it away and I was like
showing him screenshots being like it
doesn't have mercury in it you allow
these ones and he was like absolutely
not babes like get on the flight and so
I was like freaking out but everything
was fine to pick up my injection
yesterday I actually went to get it from
a pharmacy took my flask with me which
was a last minute decision um and then
got the bus back and end up getting on
the wrong bus and I ended up on the
motorway which was like so far from my
house I was like it's going to be a
20-minute Journey done easy I can easily
go and get it um and then yeah I ended
up getting the wrong bus getting on the
motorway once I'm sat with like my CM
injection in my bag in like the 30° heat
and it was
just it was stressful but I had my flast
with me and so it stayed at a really
nice temperature anyway random so I
started my injections back in August
that's when I took my first one and when
you first take it it's not monthly It's
weekly so you do one a week for three
weeks then you have a break and then you
start your monthly cycle a loading dose
that you do getting on to like symptoms
and stuff and side effects of the drug
when I first took it I had like a really
bad flu like illness come from it so I
took the drug and then maybe about 3
hours later 4 hours later after my first
time ever taking it I I yeah kind of
like crashed a bit I lost all of my
energy and I went upstairs to bed I had
like a really bad headache just like
really bad flu like symptoms my whole
body achd I was hot then I was cold and
I just listened to like a meditation
music and just tried to sleep it off so
I took it at like 6:00 p.m. I think and
so that I could kind of like properly
sleep it off and I didn't have like many
of the side effects I was asleep for a
lot of them um but I woke up in the
morning felt absolutely fine and then
was fine for the rest of the day and
then the next week when I took the
second injection I had a similar thing
but it wasn't as bad and so it kind of
knocked me out a little bit I didn't
have as much energy um and I still just
like went to bed slapped it off woke up
and was fine by the time I took the
third injection I had no symptoms and I
was absolutely fine and like I said it's
it's like a super quick injection to
take and once you get past the loading
doses your symptoms well my symptoms
were none I had like zero symptoms and
so you literally can just wake up in the
morning I take out the fridge 30 minutes
before I inject so that it comes to room
temperature I clean my leg with a little
swab wash my hands and then I inject it
which takes like 15 seconds I take it
out I put a little cotton bow on where
I've injected it to kind of reduce the
like swelling and the bruising um and
then and then I get on with my day
basically um so it's super super simple
to take apart from on the loading doses
when I had a few like flu like symptoms
apart from that I felt nothing I yeah
feel really good after every injection
in my last one to I'm not sure what it
was but in my last one I had it on the
arm when I always do it on the leg CU I
did it on my arm and I had a slight
reaction it was just a bit raised and
like a bit hot yeah it kind of like
spilled up a little bit but within like
two 3 days it was completely back to
normal and so on a whole my symptoms are
really my side effects sorry from the
drug are basically nothing it's super
super simple it's easy to remember and I
have a little app on my phone which just
sends me a little reminder on when I
need to do it and if I've had any side
effects I just log them in there and
it's just super super good so then
talking about how it's kind of helped me
control my Ms again I don't know if I
said this or not I haven't had an M scan
since I started the drug because I guess
I wasn't in England and like my Hospital
in Australia said that I was fine and
they requested to have one in like 6
months time which will be in like May
sort of time is so I'm purely going off
of how I physically feel so who knows
what's going on upstairs not me so yeah
the way that it's kind of helped me is
massively reduced my stress I feel like
just able to take things on now like I
feel stronger in my body I feel better I
honestly just feel like I have no
symptoms at all I feel like I can before
I started the drug I couldn't really eat
eat anything that was like I don't know
like had lots of sugar in it or was like
I couldn't eat anything that wasn't on
my like usual food plan I couldn't
really do things that were like high
stress or workout loads I couldn't do
like I don't know like lots of running
or anything without feeling really dizzy
um and since I've started taking the
drug I feel like those symptoms have
been completely alleviated sometimes if
I get too overwhelmed um or if I've been
eating really badly then which I don't
usually do if I've been eating like a
high sugar day or something or I've
started my day on like a smoothie Bowl
instead of like some protein then
usually I will feel a bit like dizzy and
not great but on the whole it's yeah
really really helped me control my
symptoms and I just feel a lot better
being on it and knowing that I have it
to kind of like vouch for me in case I
slip up and do something that's a bit
too stressful for my body I know that is
kind of there to catch me if I fool and
just my mental health in general it's
really helped because it just feels I
have like a huge it's like a huge stress
reliever it's it's been really really
good and then obviously this drug is an
immunosuppressant and so your immune
system is suppressed and I was really
really worried about that when going on
the drug it's the reason I didn't go on
it at first because I was like there is
absolutely no way I'm taking an immunos
supressant I am not suppressing my
immune system do you know how important
that is and I was really really worried
the more the doctors kind of told me I
realized that it wasn't my entire immune
system was going to be shut down it's
just like part of it that was going to
be suppressed a little bit honestly I
haven't really felt too much of a
difference in terms of getting ill which
was one of my biggest concerns maybe
noticed from when I've been traveling
again I don't know if it's just like a
traveling thing but from if I travel or
if I have like a hectic day I might get
like the sniffles or like a bit of a
cold or just feel a bit rund down when I
traveled from Perth to the Gold Coast I
had a cold from my previous flight from
the England to Perth I had a cold and
then that turned into a sinus infection
which was like unheard of usually I
would just like have a cold sleep it off
and be absolutely fine but apart from
that I haven't really felt the side
effects of having a suppressed immune
system to be completely honest if I've
got like a cut I feel like I heal pretty
quickly if I've yeah I have like a few
piercings and I was worried that they
were going to like flare up and maybe I
don't know not be able to fight off the
infections or whatever that comes with
having a hole in your body but um again
they've been absolutely fine
everything's been absolutely fine and
I'm really really grateful for that I
know that everyone's bodies and every
person person who kind of has this who
has a mess has it literally completely
differently it's different for every
single person and so in my experience
isn't necessarily going to be the next
person's experience but this is kind of
how I've found the last 6 months on it I
just feel pretty good on it which is
really nice to be able to say and I
think as well with the fact that it's
helped my mental state has really helped
me a lot because I was so stressed and
this disease is like thriving on stress
and so if I could do anything to
alleviate the stress which is what this
drug has helped me do it's good and I
just hope and pray that when I do have
my MRI scan whatever that is in the next
few months it comes back all good and if
it doesn't we go from there and we
switch drugs and etc etc but so far I'm
feeling good so yeah that's kind of I
guess the little six Monon recap
hopefully this has helped someone um
make a decision on what you want to do
next what your next steps are and yeah I
will talk to you soon
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