Hi all, I’ve recently been given the choice of a few treatment options and after looking into them I have decided to go with the Kesimpta injections.
I’m just wondering if there are any do’s or dont’s you guys that are on Kesimpta could advise me of before first dose etc please?
Also what are the main side effects you have had?
I’ve had a good read up on it but would be nice to hear some advice from your personal experiences.
Thanks in advance!
Cara
Hello,
I have been on Kesimpta for 6mths and am definitely less tired and getting on with life. I was worried by the idea of injecting myself, I was so surprised that it was nothing at all, no visible needle and really didn’t hurt. I feel a bit tired that day but not bad.
Ive had only one cold so same as usual.
Maybe I have been lucky but no fear was needed. Good luck
Thanks for your reply, I’m glad to hear you are doing well on it and feeling less tired. Good to know it hasn’t made any difference in you catching any more infections than normal, that was a bit of concern for me but I feel the high effectiveness of the drug out ways this.
I’ve had all my pre treatment tests and bloods done and just received an outpatient appointment through from the neurology department for the 27th March which I’m guessing is for signing the forms etc to start on Kesimpta, as the ms nurse explained I’d have to come in to clinic to sign them etc before they get the Kesimpta sent out to my home address. Was this the process you had when you started on it also?
Thanks again for your reply.
Hi Cara,
I started Kesimpta in January.
The details of the exact process seem to vary between hospitals. It is a bit frustrating not knowing what is happening when, I certainly found that.
At my hospital, I had a remote appointment to discuss the DMT and after I’d got all the required vaccines/blood tests done, I then had an appointment at the hospital where they showed me how to administer the drug. It’s dead easy. The injector pen looks like a big whiteboard pen and you just push it against your leg.
Side effects: as others say, some reaction to the first jab or two. On the nurse’s advice, I took paracetamol a couple of hours after the first jab. The “side effects” kicked in about 7h30 after the jab, and were “flu-like symptoms”. Similar to post covid-jab.
Several months in, I’ve not had any other issues. So far I’ve had one cold - everyone at work had it, so I wasn’t exactly surprised. Not sure if it was any worse for being on Kesimpta. I have a busy life (regular international travel, often in crowded public places, going out dancing…). The only precautions I take are to wash my hands on returning from outside, and avoid people who are obviously ill (i.e. if someone near me is coughing I move away or use a mask).
It’s made no difference to my MS but then my symptoms are almost zero anyway. Like others, I’m taking it for the long term impact.
I had a phone chat with the nurse about it all. It maybe when you go in, it’s to do your first injection to make sure you can do it fine ( it’s easy) then they give you a few months to take away. If you have a long way to go take a small cool bag as it’s meant to be in the fridge and it cost over thousand five hundred a pen! After that it’s delivered to your house, they contact you to arrange this. I was really tired about 4hrs after the injection for the first few month, 8mths later I have much more energy.
I have found this really helpful. I start Kesimpta on Monday. I had my diagnosis appointment at the hospital and my MS nurse arrange for the drug to be delivered to my home and organised for a nurse to come out to my home to talk me through it. I have been worried about it depleting my immune response, but positive to learn that has had minimal impact. Thanks 
Very similar experience here - again I have very few MS symptoms but this was the recommended drug. I have been on it for nearly 2 years. I feel great / I think my immune system has been better than usual and the only side effect is I feel tired the day after the jab.
Thanks for all the replies everyone, I’m so glad to hear that you all seem to be doing very well on Kesimpta and not noticing any major suppressed immune system issues. I’m really hopeful now about starting it.
Have gone through the consent now and having the Kesimpta delivered to the house tomorrow, so just waiting for the ms nurses to give me a call to go into clinic to have the first dose.