Hi there everyone, I’m new here.
I’m Arrie an 41yr old female from Essex UK.
I was 1st diagnosed with clinically isolated syndrome back in 2019 and wasn’t seen by the neurologist again for over a year (reason given as covid related). A second MRI showed more lesions and I was sent to a new neurologist who diagnosed me with RRMS in August of this year. I will be starting Kesimpta shortly and hope that will help with my symptoms which include muscle spasms and fatigue among others. Hope to make friends with other people that I can chat with and receive/give support.
Welcome. It must be a bit of a kick in the teeth that you had CIS diagnosed then MS later since if you’d been diagnosed fully sooner you’d have been able to start a disease modifying drug (DMD) sooner.
But, actually being given Kesimpta is brilliant. It’s the newest DMD and to me it looks fabulous. Had you been given a DMD sooner, you’d not have got Kesimpta. Have a look at Kesimpta (ofatumumab) | MS Trust
The reason I like the look of Kesimpta so much is that a) it’s an once a month subcutaneous injection (small needle, just under the skin), and b) it has a fabulous relapse reduction potential of 70%. (Most other drugs are either 30-50% relapse reduction or are hospital given infusions.)
I know I sound like a salesperson for the drug, but that’s only because I’m so impressed by it. I wish it had been available when I was a DMD candidate. Now I’m too disabled and have had MS too long for any drug therapies.
I really hope it lives up to its promise for you and doesn’t give you any bad side effects (yes, there are some, but that’s true of any drug!)
Thanks for the reply Sue. I was given the reason that the 1st MRI was blurry for the CIS diagnosis, but glad to have the correct diagnosis and a more qualified neurologist.
I was given the information of two different types of medication (can’t remember the 2nd ,but it was a daily tablet) and given a month to research and decided on kesimpta for the reasons you’ve mentioned. Going for my training appointment at the end of the month, so should be started on it shortly.
Sorry to hear of your so poorly, can I ask how long you’ve been living with MS?
‘Training’ for subcutaneous injections is a bit like: ‘find a fat place (my bum was always the fattest part of me!), stick the needle (or an auto-injector device) in and that’s it, done’!
If necessary you might have to cool the skin down first.
With more frequent injections you need to rotate your injection sites., but with monthly jabs it’s probably less important.
I’ve had MS for nearly 25 years. I’m not exactly poorly, just disabled. I can’t walk at all , need quite a bit of h red long from my OH and a bunch of other delightful stuff.
