No, I don’t. I did during covid, at a time when I had not even been diagnosed with MS - I always did as we were told. Right now, I’m not on any DMT. I don’t intend to change the practice, to be honest. I’m a bit fatalistic about it - I presume I will get colds, flu, covid etc. like everyone else does from time to time, given the life I lead. And although “respiratory infections” can be a side effect of DMTs, reading the background on kesimpta I didn’t get the impression that these infections are more serious, necessarily, than they normally would be. Getting the odd cold, or even flu, is not in itself the end of the world. I have also had covid once - after being vaccinated - and it was like a mild case of flu for me.
That said, I could well understand if you felt more comfortable with a mask, being on kesimpta. And perhaps I would reach for one if the person next to me were coughing…It’s just that I went through all the covid restrictions, it was a horrible time (bereavements and so on) and if I wear a mask now every time I am mingling in public, I will never take it off!
As I say, a very personal decision. If an MS nurse/neurologist advised me to take precautions, I would. And if I did get covid, I would immediately contact my GP to act for treatment (there is now treatment for covid and we are entitled to it, having MS).
I can see this is still on your mind.
Do you write lists of questions to take when you do have an appointment with someone? I find it helps me not to forget…
Remember also your entire immune system is not wiped out by kesimpta, just one part is depleted.
I think I will always have endless questions. I just asked the Kesimpta nurse about the potential of visiting a busy bar in Geneva and she said I should try to avoid….
Hi Teddybear. I’m not one Kesimpta and Sorry to be the unwanted grumpy old git ( 70 next summer) but unfortunately there are no certainties with MS nor I suspect with the treatments. A great deal depends on your personal physiology/ biology. Before Covid reared it’s ugly head I wasn’t too worried but would avoid busy, airless places during flu outbreaks. As mentioned in earlier post, in spite of being fully up to date with vaccinations I got Covid last year and even with antivirals which I started 2-3 days after positive Covid test, it made my MS symptoms much worse for months.
Others have little or no symptoms or effects from Covid and the latest strain sounds much weaker than the one I got last year.
MS brings a life of uncertainties, risks and risk taking/ risk assessments. Kesimpta seems to provide better protection than Avonex ( which I use)
Not at all @Hank_Dogs i appreciate the candour. This is why I ask my numerous questions. My logic is this though. Kesimpta was recommended to me by my neuro for reasons of young kids and busy job. If I can’t go into a bar (I don’t need to and I think my anxiety around this will prevent me having a great night out with my friends) but if I can’t, how do I get on a train, a plane, go to cinema, theatre, gig or the office.
The logic doesn’t track either in that the nurse said she has many primary school teachers on it…kids are a plethora of disease…
I just don’t get consistent answers from any of the health care professionals and it’s created me so much anxiety I’m now going to get a course of counselling. I don’t want to shorten my life as the deal with the man upstairs is I live until the kids are at least 18 so he has to grant me a minimum of 12 more years haha.
The other thing I’d add is since taking Kesimpta I’ve felt quite poorly so I sincerely hope this B cell therapy comes good in the long run. That said I’m not an ill person, I don’t have relapses of any note and this is one huge leap of faith. I suspect I feel this way due to it being the loading doses and certainly week 2 is 98% better than week 1. I don’t want to put anyone off because despite how I feel I am still continuing for hopefully the longer term good. @Hank_Dogs can you swap to this drug? Meant to be the drug of choice now
Hi Teddybear. I guess that after 17 years I’ve just got used to the lack of any certainty with MS plus the hesitancy of the health professions to give definite ‘yes’ or ‘no’ answers. I think the problem/ challenge is that MS and its course is so individual. Some lucky people have few or limited symptoms and disabilities others end up ( relatively quickly ) in wheelchairs.
Where my thinking / feeling is that after 17 years and age 70 next year I’m not too bad ( Managed to walk a fairly quick 1km yesterday 
). I’m sort of hoping that if I can escape any significant further damage then who knows - myelin repair treatments might be available before too long and I might even live for longer than my Dad ( he didn’t have MS and lived to 96).
I sort of mentally and automatically balance ‘risks’ e.g I do go to restaurants for lunch but would be wary of a busy night out, we go to the cinema but to afternoon showings when the cinema is quieter, the theatres round here are old and very nice but so airless and seats are close together so we avoid them esp during flu or Covid outbreaks. We haven’t flown recently but used to before Covid and hope to again . It’s quite a few years ago now but we were on a short cruise that had an outbreak of some horrendous flu and vomiting illness . I caught it a little but not too bad and it didn’t result in any MS problem. The later emergence of Covid however, and my experience of it has definitely made me a lot more cautious!
Anyway, It does all get a bit tedious- trying to estimate ‘risk’ and making decisions without any certainty. I could deal with e.g a period of even quite bad illness of some sort but I am basically scared of permanent damage to brain and abilities etc
In answer to your question about Kesimpta, thanks and yes I have thought about switching. I see my MS nurse in a few weeks and want to discuss moving from Avonex.
For what it’s worth - I think you will make 12 years easily !
As ever @Hank_Dogs thank you and thank you for your words of wisdom. I do find it funny that my neuro denies any connection with covid and relapses. After I had covid I had a very painful relapse where the neurological pain felt like someone running hot needles up and down my legs! That was a first. I am blessed so far in that no relapse has, so far, debilitated me. I’ve no doubt these things can change. Managed a jog today (have enjoyed running since covid but a badly broken toe earlier this year set me back. So back to the early stages of couch to 5km to avoid injury. Will build up from there again!).
I’m so pleased to hear you’re keeping well and sounds like you have some good genes for longevity! 96! Awesome!
I understand the concerns about permanent damage. I share those. I also don’t want to get very unwell on a different landmass to my children.
I’m very frustrated by the inconsistent messages! Only on week 2 and took me almost 5 months to get here.
Hey, I just wanted to say your message totally spoke to me. We all want role models in this condition, my ms nurse was telling me one of her patients climbed a mountain last year… very impressive but I just wanted to know if I can still goto the pub lol. I hope you are doing alright with Kesimpta and doing all the things you enjoy. I sometimes don’t look on here for fear of reading worst case scenario’s, but your message spoke about the same fears and questions I have too (told they want me to start on Kesimpta yesterday). Sending you all the best
Thanks. I’ve been on it almost a year now. I’ve had covid - wasn’t the most fun but defo could’ve been worse. Got the anti-virals. They are disgusting but necessary I guess. I had one month of relentless infections. Overall though it’s going ok. I still do everything I want to. Hope it works well for you and keep in touch. X