Hi all. Will be finishing my 2 years of Kesimpta in January and, after having my annual check with my neurologist, he’s decided it will be good for me to have a bit of a DMT holiday, to let my suppressed immune system recover - this is concerning me so looking for any reassurance anyone can give please as feel like I’m being just left to see if something then happens eg a relapse! Help!
How have you been on the Kesimpta otherwise @Holibobs ? have you been on an even keel..so to speak?
That’s interesting - I wonder what’s prompted this from your neurologist.
Presumably if you are on Kesimpta you do regular safety monitoring. What were the results like from your blood tests? I wonder if they show your immune system is very weak - perhaps they are concerned you are vulnerable to infection.
Hi. Yes, no problems or relapses whilst on it although think there is some smouldering ms progression going on in the background - he mentioned my age as I’m coming up to 55 and said there’s a balance to be struck between being immunosuppressed and having a better immunity to protect against infections which might cause relapses themselves….?
Hi. Yes, I always have my regular monitoring with bloods, but no mri since I’ve been on Kesimpta although don’t believe I’ve had any relapses. Think he is concerned re my age (almost 55) and whether my immune system shouldn’t be suppressed for too long to protect me against picking up infections that might cause a relapse…. Just concerned as not being on any DMT strikes me as inviting trouble although he has said they don’t now think there’s any benefit to staying on Kesimpta once you’ve had it for 2 years! 
Hopefully as he’s the so-called expert, you won’t experience any significant worsening of your ms @Holibobs I don’t have any experience of DMD treatment so can’t share anything there. Wishing you well, however.
Well that’s interesting. Would you mind my asking where you are based?
Different trusts seem to have different policies - I’ve founded changes when I moved to a different location.
For what it’s worth, I’m supposed to get an annual MRI at my trust. It isn’t actually happening due to problems with their MRI, but that’s the intention. Sometimes MRIs can pick up on changes that are not reflected in symptoms.
On the age thing, if you look at peer-reviewed journal articles, there has been some research about discontinuing DMTs as people get older. The concern about balancing treatment with immune suppression is, in itself, reasonable. However, I think some of the research found that it was not a good idea to discontinue. And there’s always a question of what counts as “older” - 55? 65? 85?
I think if you’re concerned about this it would be reasonable to seek a second opinion, perhaps from someone at a different trust. You could ask your GP to refer (think we have a right to that?) or if you can afford it you could go private.
Otherwise, you could do some research yourself and depending how you feel, contact your consultant, via the secretary, to ask for some more explanation. I’d also want to know whether they have considered a DMT that is less immune-suppressant. There are older DMTs in the “lower efficacy” group that can help prevent relapses and are not immune suppressant, I think - why is that not an option?
I’ve also not heard about Kesimpta being limited to two years. I’ve been on it for nearly 2 years and no mention of stopping - I’ve just arranged to take my next batch. So I wonder if this is a very new policy or where it comes from.