jasfromtas 28/05/15
Last reply 3 years ago
Lemtrada – how long off work?

Hi guys! Currently on day #2 of steroids for yet another relapse, which is a poop, but as my third relapse on Gilenya has the advantage of my Neuro now being happy to look at Lemtrada for me. I am having a workup in the next few months (Haematologist, Immunologist etc, as have some other factors in life could make Lemtrada complex – but still going for it!).
So looking at Sept/Oct after all this is sorted.
Need to discuss time off work with my managers and am wondering what others experiences are? They will need to arrange back-fill (so need at least 2 months notice – which means I have to plan for time off). What are others experiences in this regard? What type of work do you do and how long did you need off after Lemtrada? What was the reason? (fatigue, increased symptoms or immune crash?) How did you tackle this discussion with your employer?
I asked my neuro and he said 2-6 weeks, and did not say if this includes infusion week. Very helpful…

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Anonymous
3 years ago

I’ve been signed off for 10 days all in all. Whether I’ll be up to going back by then is another matter. You’ll be high risk of infection the first few weeks so a lot might depend on the type of work you do.


jasfromtas
3 years ago

Thanks @sandwich.
What day are you now and how do you feel? What type of work do you do?
I do 2 jobs, teaching nursing online (about 10 hrs a week) which I managed to keep up during a 3 week hospital stay in March (relapse), though I’m not sure I’d do that again (was buggered). Literally worked from bed! Also work 20hrs a week in a hospital (petri dish much?) and managed to pick up gastro in Jan despite not going to the ward. I work in education there and use a wheelchair so my patient contact is minimal, but I guess you still get exposed…


tracyd
3 years ago

@jasfromtas

It really depends on what you do, I’m a Telecoms project manager who can work remotely when I need too, Work have arranged a ‘quarantine room’ for me when I go back next week so everyone else is on the other side of the glass and can’t actually cough or sneeze on me – only non plague bearing germ free people will be allowed into the room 🙂

I had my Lemtrada last week, I was an inpatient at Southampton General and I simply took my laptop into hospital and worked from there – best endeavours only, but apart from a couple of short naps in the afternoon after the Anti-histamine IV I worked normally as if I was at home. I was really surprised that the Neurologists on the ward approved whole heartedly of me doing that – they said people sit and get bored and dwell too much in hospital and it makes them feel worse and brood, keeping busy keeps your mind off it all.

I’m working from real home this week and again it’s going well, if I’m honest I could probably have been in the office this week but I’m at home with the dogs.

I did a LOT of preparation for the treatment, I took 2 months of huge volumes of vitamin and mineral supplements including ‘healthy immune system’ supplements. I also did oxygen therapy twice a week to ensure my red blood cells were well oxygenated (they’re very healing) and I was drinking 3 litres of water every day for the 8 weeks before and during and still now to flush the dead white blood cells out of my system. – as I said I’m a project manager – it was about mitigating risk and reducing the chances of symptoms I knew others had experienced – plus one your immune system is squished you really do want every other part of your bodies natural defences at peak fitness to pick up the slack. I even took a week’s holiday in Portugal a fortnight before treatment in order to just chill out and rest.

Talk through with your employer what you ‘can’ do and get the planning in place in advance, it takes away a lot of the worry

Everything up to and during treatment and the last week is recorded here if it helps xx
http://tracyslemtradajourney.blogspot.co.uk/

Good luck
x

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