I’ve been recently confirmed with remitting relapsing.
My Dad has MS and I’ve always been quite nervous of any ‘odd sensations’ I’ve had.
In 2012 I had a very mild (slightly shadowing in the very centre of one eye) Optic Neuritis for about 6 weeks and then nothing.
In 2025 I had a stabbing pain in one leg when going to bed, which the doctor believes is/was Meralgia Paresthetica but did make me a little concerned.
The other one thing is what I now believe is ‘altered sensation’ as a slightly odd feeling in fingertips in left hand, which then spread into hand and is now very mild. Possibly changes after a shower if I get hot or cold.
A test showed I am slightly weaker in one leg, which I have never noticed.
MRI showed lesions on brain and spine they have suggested either the cladribine tablets or Ocrevus either self-inject or go to hospital every six months.
Quite a lot to process and swaying towards to the Ocrevus, I think.
Would be interested to hear any thoughts or opinions.
I am currently considering the same two meds so am also keen to get peoples thoughts/experiences on them. I’ve been diagnosed since 2021 and have been on copaxone and Tecfidera (currently)… Frustratingly I have lost a lot of weight this year and been strength training etc so I feel fitter and stronger than ever but sadly my MRI showed more new lesions than any other year so now time to change meds. I’m also leaning towards the Ocrevus so we could be on a similar path. I didn’t think Ocrevus could be self injected though, I’ve been advised it has to be in hospital.
The ‘Disease Modifying drugs’ leaflet has lots listed and the self-injection is actually drug name ‘Kesimpta’ and chemical name ‘Ofatumumab’ which I believe is the same as the Ocrevus (I have linked the names to the MS Trust where I was reading about them, as well as booklets the hospital gave me.
I do have a call on 6th and will be asking about this anyway.
The self injection and 6 month hospital one have an 80% chance of no further lesions and less side effects according to the information.
How bizarre, I’ve also been on a calorie deficit and strength training, which I was surprised with my results
Hi Dave. Good luck with your choice mate. I’m not diagnosed yet but, apparently there’s a new MDT meeting to discuss my scans and CSF results this month. My consultant is pretty convinced so far so, I may have a similar decision to make soon. I’ll be opting for whatever doesn’t have me sitting in a hospital - I’m really not a fan of those places.
It sounds like your diet and strength training is going well - keep that going, I reckon it will pay dividends further down the line
Hi I am just trying to catch up with this conversation. Can I ask which drug is best when there is muscle twitching feeling like your whole body is shaking. A bit like being poisoned only you are still eating and drinking. I want to get a referral but I need a little help with input as I have not had much help in the past. I think an infusion type therapy might be the way to go for me but I have no clue what’s best. I have not found doctors to be very knowledgeable for me, even specialists. So I need a little ground work first to get me in the right direction.
I had my first treatment, Ocrevus, Ocrelizumab injection on Wednesday 18th.
It is a very odd sensation, small needle (really dont like needles, nearly passed out, sitting in the chair, before we ever started! but that is just me) then a thin plastic tube into stomach, then a machine pumps the medication in for 10 minutes, dare I say that was ok.
Later and next day stomach a little sore and slightly red, but now feels ok and a little visual redness.
I feel my biggest concern is that after this I am now immunocompromised and how to handle this? I’ve been double masking and washing hands if i go any where. I did go to the pub a couple of times, but to a quiet pub.
Just not sure going forward if I should be hypervigilant as believe after the treatment we just remain immunocompromised?
I think it would be helpful for you to talk to your MS team eg your MS nurse about any precautions you should / should not take due to being immunocompromised.
I take Kesimpta, so a little different to you, but it does the same thing and works the same way as Ocrevus, as far as I am aware.
My neurologist said there was no need to take lots of special precautions in daily life and that there were teachers, healthcare staff, people doing all sorts of public facing jobs who took Kesimpta and got on with it.
Personally my line for myself I suppose is that if someone tells me they are ill, I will keep my distance, but other than that, I will just carry on as normal. I personally don’t what to live my life worrying about getting ill.
I haven’t been on Kesimpta long but so far have not picked up extra infections as far as I can tell.
I hope you get some support and guidance from your MS team.
PS, I don’t want to sound like I am belittling anyone who is worried about picking up infections - I am not. People each have their own thoughts and feelings and opinions about what is right for them and I am absolutely respectful of that.
I was just trying to share about what my neurologist had said and how that had shaped my personal thoughts about wearing masks etc
I didn’t think Ocrevus could be self injected though, I’ve been advised it has to be in hospital.
(I have linked the names to the MS Trust where I was reading about them, as well as booklets the hospital gave me.
