Ponvory and ENT infections

Symptoms and treatments
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1

My MS journey is long (15+ years) and convoluted (I was ‘forgotten’ by the medical profession for 10 years!), suffice to say I started Ponvory treatment just after Christmas. My MS does not, generally, affect my mobility, so I’m fairly active, enjoying going to the gym and cycling. However, since starting Ponvory (after an MRI found a lesion at C6 in my spine, to go with the other 40+ in my brain) I’m suffering from cold after cold after cold. It’s relentless, and is affecting my ability to exercise.

This is a common side effect of Ponvory treatment, which is understandable when you realise how the drug works. That doesn’t make it any less annoying though.

I was wondering if anyone else on Ponvory has experienced a similar ‘perma-cold’ and can offer a smidge of hope that things will calm down at all, or whether I’m just going to have to learn how to deal with it.

2

Hi,

I have had MS since 2008 and was on Rebif until 2021, my doctor asked if I wanted to come off my medication as I had no relapses for 10 years, so I did, I had a relapse in Jan 2026 so I am now going back on medication, I have chosen Ponvory, I can’t seem to find too many people on it, so interested on how you are getting on with it.

3

Well I’m about 18 months into using Ponvory now: the perma-cold finally stopped, which was a relief. My last MRI showed no new lesions - I’m due another MRI in a couple of months and I’m hoping it too will show a similar lack of progression. I was told that stopping Ponvory will increase the risk of a relapse, but I have no need to consider stopping it at the moment.