So about a month ago, I had my first bad infection while on Kesimpta (I’ve been on this since May 2023). It took 2 weeks of antibiotics to clear it.
Subsequently, I have experienced a flare of old symptoms in my left arm, but also new symptoms in my right arm. My MS team have told me that this is ‘probably not a relapse’, but down to inflammation due the infection and subsequent antibiotics.
My MS team are always extremely reluctant to even say the word ‘relapse’; plus I’m confused by the explanation given of “the infection causes inflammation which makes you worse, and antibiotics just add to that”.
I take a keen interest in how this disease works (I’ve had it for over 20 years!), but I cannot find anything to read about this mechanism.
Can anyone shed any light on it? x
sjs1971
I would like to hear views about Kesimpta too.
Thank you.
I think that the problem is that MS in general is a poorly understood condition and the study and knowledge of MS is not an exact or definite science
I’ve always found the terminology of ‘exacerbations’, ‘flare ups’ and ‘relapses a bit confusing and I’m pretty sure that those terms aren’t used consistently.
Apparently they all refer to the same thing I.e when , in broad terms the immune system causes damage to new areas of the CNS or significantly worse damage to old areas.
Similarly, I’ve never been fully convinced by the demarcation of RRMS and Secondary Progressive ( apparently a lot of the separation/ classification is to do with getting licences for new MS drugs)…
Anyway my understanding of MS is that for as yet poorly understood reasons the immune system attacks the CNS and leaves areas of damaged/weakened nerves which do heal a bit but are left with a lesion - something like the equivalent of a ‘scab’ . The damaged areas show up in MRI scans but sometimes the damage is too deep and hidden in the brain.
A bad infection of some sort (bad flu, other infections or in my case COVID) fires up the immune system which sets about destroying the invader ( bacterial or viral ). In some way I don’t understand the rampaging immune system can also ‘inflame’ the old MS lesions and make it harder for the nerve cells to function properly. Once the infection goes and the immune system dies down a bit the nerves should go back to their pre- infection state and function. So, as I understand it, the medical world says it’s not a relapse , it’s just a temporary worsening.
However, in my experience of COVID, yes my symptoms became much much worse and as COVID faded the symptoms started to return to pre COVID state …. Except they have never recovered fully !
I am sure that those medics / neurologists who now talk about ‘smouldering lesions’ are quite right. Not quite sure of the biology but it certainly makes sense to me that the errant immune system keeps ‘nibbling’ away at lesions which over time get worse and any infection, periods of acute or chronic stress will just further activate the ‘nibbling’ .
Not totally sure why antibiotics might cause a temporary worsening of symptoms but I guess that , as they are chemicals/ agents that are alien to your body they might cause a temporary heightening of immune system activity.
In general, I tend to go by the idea that anything that puts mind and body under increased stress is going to increase immune systems activity which has the potential to lead to new attacks on the CNS and perhaps to new areas of damage ( new lesions) or temporary inflammation of old lesions .
That’s my take on things.
I’ve had to pause my Kesimpta treatment indefinately, due to recurring infections: Covid, pneumonia, parainfluenza, Covid again (I’m currently in hospital due to infection [again]). 
I’m due to start kempsita soon, do you tend to get ill alot whilst on it? Or is it just around the time you have the injection @muchthesamemuchness
You are alerted to the fact that you might be at an increased risk of upper respiratory tract infections and UTIs. Since being on it (started May 2023), I’ve had COVID where I tested positive for 13 days (despite having antiviral medication), and my recent chest infection that needed 2 weeks of antibiotics.
If you have antibiotics, you have to delay your next injection by the length of your antibiotic course. So I had 14 days of tablets, therefore instead of my next jab being on 10th August, it will be on the 24th.
My lymphocyte count has been screwed since I had alemtuzumab, and has never recovered really (same came be said about my thyroid!) So my immune system is pretty low. That being said, the recent chest infection, aside from COVID, is the only infection I’ve had since being on Kesimpta.
Everyone is different and everything will be explained about the drug to you. Aside from the loading doses, it’s a really easy drug to use and get on with. Best wishes!
Hi @shainiemmanuel and @sjs1971
I’ve not had much luck being on DMTs for my multiple sclerosis tbf, I know it doesn’t work well for everyone.
I had more MS flare-ups/relapses on Avonex (beta interferon), than not being on any DMD whatsoever before that.
Lemtrada (CD-52) ended up giving me ITP blood disorder and hyperthyoidism Graves’ disease.
Kesimpta (CD-20) I started last August, I had Covid last September, Pneumonia last May, Parainfluenza last June and Covid again this month.
Neurology has suggested I take Kesimpta every other month, but I just don’t want to go down with another infection tbh, I’d prefer to try Homeopathy again which worked so well for me 24 years ago.
Best,
JP
Sorry to hear none of the DMT’s worked for you 
what is homeopathy if you don’t mind me asking? @muchthesamemuchness
When you had all these infections/illnesses, was this after you had each DMD ? Or was it just throughout the year due to weakened immune system
It’s complimentary medicine and it used to be available on the NHS before, although when I had it, it was through a family friend so I never started on conventional DMT until 9 years after initial diagnosis.
JP
Oh wow ok, never heard of this before. Is it something they don’t offer anymore ?
For balance:
Homeopathy is scientifically implausible.
It may just be coincidence complimentary/alternative medicine may work well at treating multiple sclerosis, same coincidence Kesimpta may have possible infections and relapses side effect.
JP
Not sure I would use homeopathy but I’m Genuinely interested in how Homeopathy works with MS- what compounds are used and how are they selected?
There used to be a Homeopathic hospital in Glasgow ( not far from where I live) . Its services are now incorporated in the NHS Centre for Integrative Care which offers a range of complementary treatments
Oh wow never heard of this before. Just out of curiosity, how comes my MS nurse never mentioned this and only mentioned the DMD’s available. Is this only available in certain towns ect?
Because homeopathy is pseudoscience and quack “medicine”. No self respecting MS service would offer homeopathy as a first line (or any line) treatment for MS.
Oh right, ok. Thanks for that.
@shainiemmanuel I guess it was particular to NHS Greater Glasgow and Clyde. When I was first diagnosed some 18 years ago at what was the Southern General, now Queen Elizabeth University Hospital, the hospital ran sessions for ‘Newly Diagnosed’ which was very useful. Included sessions with people previously diagnosed, a visit to MS Revive ( a centre offering counselling, physio, exercise classes and similar) and a talk by someone from what was the Homeopathy Hospital.
The NHS wasn’t recommending homeopathy at all but did say they knew some people were interested as a possible additional treatment.
The Centre for Integrated Care is an NHS centre.
I think homeopathy has moved on a bit nowadays from the compounds and concoctions, of 300 years ago.
I just remember taking a variety of health supplements and also having body tweakments done, namely Bowen and Reiki therapy, complimentary/alternative medicine worked for me but it’s not everyone’s cup of tea tbf. 
Thanks @Hank_Dogs ! Oh I see, thank you for that
Thanks for that @muchthesamemuchness !