Hi there, I’d just like to know anyone that is currently on the DMD Kempsita. What is it like the first time a nurse comes ? What should I expect and how did you feel after first one? I’d appreciate anyone’s thoughts or experiences on this.
Hi there i received my first injection under supervision of ms nurse. It was fine and settled down fine xx
Hi there, thank you for reaching out. Oh that is good to hear!? If you don’t mind me asking, what happens at the first home visit with the nurse? And how did you feel after your first injection, was you ok or did you become ill at all? X
Not sure this helps at all but when I first started on Avonex a nurse from the supplier visited. After general chat she showed me the injector device, and with an empty device and using a dense foam pad showed me how to use it. She then invited me to practice on the foam pad before moving on to showing me where and how to inject myself . Finally she invited me to do a self injection with a real injection pen.
She also told me about storing the pens, how to dispose ( in a ‘sharps’ box). What side effects I might experience and so on. It was a pretty thorough coverage and , in the circumstances, all very friendly and supportive. Can’t remember exactly how long it lasted but I would say a little over an hour and we offered her tea and biscuits.
Thank you for this reply! It’s very much appreciated 
is the DMD your on an injection too then? I’m starting kempsita
Yes, Avonex is a weekly injection in my thigh . When it was first prescribed it was in the form of a syringe which you loaded into a rather scary looking spring loaded contraption. I gave up on the spring loaded contraption and got my wife, who was a nurse, to inject it in my buttocks without using the spring loaded thing
Fortunately, a few years ago the makers started supplying the injections in the form of a sort of preloaded pen which you press onto the injection site and press a button. It has a shorter needle than the old syringes. It’s pretty easy to use and only once in 10 years or so has it hurt at all.
I think Kesimpta injections might be a little different: Avonex is injected into muscles and the needle goes in 1/2 inch or so. Kesimpta I think is just under the skin but all will no doubt be shown to you.
I remember when I started and I guess like everyone else, I found it all quite unsettling and scary ( coming on top of the scary MS diagnosis). It’s now a weekly routine - not exactly enjoyable but it has become routine although there have been a few times when late in the day I suddenly realise I’ve forgotten!
Hi there,
I’m on Kesimpta, started 6 months ago. At my hospital they give you an appointment with an MS nurse who shows you how to do it, but I’m sure it’s much the same thing.
It was all pretty straightforward. They run through the basics about the DMT, stuff you probably know already. Then they show you how to use the pen. The nurse I saw let me “practice” with a dummy pen first (no needle in it), and then watched me do the first one. You have a choice of sites (arm/stomach/thigh) - personally I find thigh by far the easiest.
The pens look a bit like whiteboard pens. They’re simple to use.
The most helpful thing I was told was to take paracetamol a few hours after the first jab. For me, it took about 7 hours for the post-jab “symptoms” to start. They were like post-covid vaccine symptoms, if you had them - fluey shivers, sent me to bed. So the paracetamol is to preempt these effects a bit.
After the second jab I didn’t have any more symptoms. Some people do seem to find it takes a bit longer to settle - I think it helps to take loading doses an hour or two before bed time. That way you can sleep through any side effects!
One thing I would ask them: What is their procedure for issuing the next set of pens? At my hospital they have to do an interview with you and blood tests (checking for safety). It’s important they do all this in time to issue the new prescription and get the pens to you. You need to know how they organise themselves and whom to contact if it’s not happening - so you don’t run out of pens.
Hi @Leonora thank you for the reply! And this helpful bit of information. I
Was told by my ms nurse that someone will come home to me once for the first 3 weeks, I’m guessing it must work slightly different where I am. Do you have to do that injections at the same time each month or does it not matter? And also, since starting kempsita have you had any symptoms/relapses? I’m so nervous to start it, like walking into the unknown. It does really help hearing peoples experiences. Although of course I know everyone is different.
Hi,
After the loading dose you do monthly injections on the same day each month, e.g. the 5th, the 10th. However, you can vary by a day or so either way I think, for convenience, as long as you keep the gaps roughly even - that’s what the nurse told me. After all, not all months are the same length.
I held off my March dose by a day because I was recovering from a cold - and in any case February is a short month.
On the symptoms, I’ve had similar symptoms to before starting, really - for me this means transient pins and needles in my feet and also, on waking, in one or the other hand. I had one transient episode of wrist paralysis. But none of these have been classed as a relapse, they were too transient. So - definitely no better, not really worse either. I’m in my 40s and it may be I have an element of progression independent of relapse. I’m not obviously worse though and no dramatic events.
I think some people may find that when they take their kesimpta, their fatigue falls off. But I never had fatigue so can’t comment.
I’ve just had my 6 months in scan, which was stable.
The frustrating thing for all of us is that you can’t know what would have happened if you’d done something else - whether you would have been better or worse. But I think with whatever DMT, if you were having relapses on it, they would probably switch you.
Thanks for this info @Leonora ! What’s does transient mean ? So you haven’t had any relapses since starting kempsita but you have had some old symptoms? There is
Honestly so much to learn and understand… I have my first consultation appointment with my MS nurse next Friday, then hopefully will be starting kempsita, the DR says she highly recommends that I start kempsita or the IV drip one both that are highly effective at 70%… My choice is Kempsita anyways… Also may I ask, if you have experienced any muscle spasms, as this seems to be a new thing that has come on for me, in my right thigh.
Hi,
Sorry - by transient I meant short-lived. I get “paresthesia” (pins and needles) but it will be with me for a minute or so, during which time I swear at it (best treatment ever) and stamp about. Then it goes.
And yes, no relapses, but similar symptoms to what I had before. That’s just my experience.
On the muscle spasms, not sure. I do sometimes get an electric shock type nasty twang up the side of my neck to my head. My neurologist said it wasn’t possible to say whether that was MS or just me - but it’s nothing serious. I think spasms can be MS, too - worth mentioning to t the nurse when you see him/her. They usually say symptoms have to last 24 hours to “count” as a relapse - but I think if you get a new symptom that comes on regularly, it’s worth mentioning.
A lot to take in… yes. I went to a day for newly diagnosed people, funded by the MS Society, which was really helpful. Look out for those in case there is one on near you. The MS Society also sometimes have online sessions for newly diagnosed people.
It sounds like you are doing all the right things, anyway, engaging with your medical team and starting a high efficacy treatment. Some people are tempted to just bury their head in the sand…