Last reply 2 years ago

Hi guys just wondering when I start lemtrada and have to avoid unpasteurised stuff how long do I need to do that for and does anyone have any food ideas what will be no problem to eat it’s all a bit confusing thanks.

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2 years ago

Hiya. My centre are advising starting the diet a month before treatment and carrying on for at least 3 months afterwards, maybe longer if you can hack it, especially if your lymphocytes are slow to come back. There have been recent serious issues with Listeria so they’re being very cautious.

With regards to the practicalities, anything you cook yourself at home should be fine so long as you cook it well and practice good kitchen hygiene. If it comes from a tin/jar rather than the fridge it’s fine hot or cold eg tinned tuna. If you’re cooking pre-prepared food (eg soup, pasta sauce, ready meals) that’s fine so long as it is piping hot. Oven/stove more reliable than microwave. Stay away from salads and thoroughly wash/peel fruit. No cold meats/fish or unpasteurised dairy. Most hard cheese is fine, but worth checking. Milk and yogurt fine. Don’t leave leftovers hanging around.

Just need to think a bit differently eg jacket potatoes, soup, beans on toast rather than sarnies with salad. Better to be doing it at this time of year than summer!

2 years ago

I wasn’t given any advisories for either of my two courses so ate what I wanted. I think I read there was a recent death from Listeria though so best to be cautious. Ask your nurse. They really should provide written info on these things. There is a lot of hype about Lemtrada online so stick to trusted sources of info.

2 years ago

@sandwich, there was. ? It was at my centre, hence their hyper-cautious attitude. It is a rare but known complication. But the diet is not that hard to follow (most women do it throughout their pregnancy), so it’s a fairly easy way of helping yourself. I wish the different centres would follow the same protocol, the difference between the tests offered, precautions taken and advice given a different hospitals is huge and really confusing and anxiety inducing. Grr.

2 years ago

Hi guys I’m starting Lemtrada in feb and haven’t been told anything about amending my diet… think I’ll call my nurse x

2 years ago

@imbarca thank you very much for your help much appreciated x

2 years ago

Hello, i had my first round of Lemtrada in December 2016 and was given a ‘foods to avoid’ list and advised to stick to it for 28 days after treatment. Not a problem as i cook from fresh and ensure food is piping hot before eating it. My only gripe was missing out on all the lovely unpasturised cheese at xmas!

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