marks 03/06/15
Last reply 3 years ago
Exercise and Work after Lemtrada

I’m due to start my Lemtrada treatment at the end of the month. I was wondering if anyone who has had the treatment can give me any indication of how long they took off work and were able to return to exercise?
I had a severe (and so far only…) relapse last year which required me to have 2 – 3 months of intensive Physio to learn to walk again.
I’ve since managed to get back to my pre MS self. I’m running marathons/triathlons and I know I’ll be keen to get back to running etc ASAP after the infusion as it makes me feel do good and helps combat fatigue etc.
Any advice would be much appreciated.

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tracyd
3 years ago

In relation to the ‘back to work’ question – it really depends what you do and how you can work.

I am a May 18th Lemmie

I’m a telecoms project manager and have the ability to work from home, I took my laptop into Southampton Hospital and worked through my infusions – the Dr’s actually approved of this saying if you have something to keep you busy the time passes more quickly and you don’t just lie there feeling crappy or over analysing every bit of yourself. I worked from home last week and am back at work today in my little glass ‘isolation suite’ where nobody can sneeze or cough on me.

As for the exercise – well I’m built more for comfort than speed, but I have all the same stamina etc that I’ve had before treatment. I did however have an intensive preparation for treatment before I went it – lots and lots of vitamins and minerals and immune system supplements (you want your body’s remaining systems to pick up the slack once you squish those nasty attacking white blood cells) and Oxygen Therapy twice a week to super oxygenate my red blood cells to make them super healing and also helps greatly with fatigue and brain fog for me.

Also that 3-4 litres of water a day …. start doing it now because you quickly discover you have a bladder the size of a peanut and your bathroom needs a revolving door – it takes 2-3 weeks to get used to that quantity of water and you don’t want to be back and forwards to the loo dragging a drip pole with you for 4-5 hours during the infusion.

Keep the water going before during and after so you flush out all the dead WBC’s dehydration is the root of a lot of people’s symptoms – dizziness / sickness / fatigue rather than the treatment itself

Good luck, if you want to talk more add me and PM

It’s all documented here : http://tracyslemtradajourney.blogspot.co.uk/

Tracy xx


marks
3 years ago

Hi Tracy. Thanks for the quick reply. I do a lot of guitar teaching in schools but won’t have to go back to work for 8 weeks after the infusion as they’re all on holiday. I’m guessing that should be long enough for my immune system to recover a bit?! How long have you been told to avoid people with coughs and colds?


tracyd
3 years ago

@marks
I was told 8-12 weeks, it depends on the blood tests and urine tests you have to do every month for the next 5 years. It’s worth talking to your neurologist and MS nurse about that, children are notorious little plague carriers so it might be worth investing in some surgical type masks and gloves and a few gallons on anti bacterial gel for when they get back.
That said I spent a large part of the weekend on a critical care ward in Birmingham Hearltands hospital, mask, gloves, gown and about 4 gallons of anti-bacterial gel sadly watching as my younger brother passed away – so far so good no nasties 🙁 so that’s either a lesson we don’t have to live in a bubble or a lesson that I’m a bloody idiot and should be ignored I will keep you informed xx


marks
3 years ago

Thanks for the info Tracy, sorry to hear about your brother. Time to invest in face masks and anti bac gel!!!!!


del1977
3 years ago

Hi Marks,
I’ve just been put forward for a course of Lemtrada treatment – I have suffered MS relapses of increasing severity for 4 years.
In and amongst my MS symtoms I have clung onto my main hobby – cycling – although now slower (aren’t we all!) I still compete regularly. It’s really difficult to get advice on recovery times after Lemtrada – MS advice tends to be “recommended exercise is 30mins 4-5 times a week” – I typically train ~15 hours a week (obviously much less during a relapse episode!)
Your post suggests you too do more exercise than the average… would really like to hear your thoughts?!


tracyd
3 years ago

@marks @del1977

One thing I will add to my personal experience is that I have the same energy I had before the treatment and because I’ve kept the water going I have not had fatigue like symptoms yet. I do feel better physically, but I think that’s a result of the IV steroids. I have feeling in my legs again, and a little feeling in my left arm. My balance is much better, and my collapsing leg hasn’t made me do a ‘DelBoy in the bar fall’. If it’s the steroids and it does get worse again, I look forward to it righting itself naturally over the coming months while my immune system takes a nap 🙂

If you prepare well for it and take care of yourself then you should sail through it xx

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