Hello, I was wondering if anyone could give some advised on being treated with Tysabri?
My daughter (she’s 21) was diagnosed 2 weeks ago and has decided to be treated with Tysabri. We have all the booklet and the doctor speak and we spoke to a lovely MS nurse, but I was just wondering about just normal things really. How would a simple cough or cold affect her? She wants to book a holiday to America next year, will there be any restrictions on her? She’s going back to work on Monday, who have been very supportive, will she have to be careful if anyone she works with has a virus of any kind?
I know these probably seem like silly questions, but this is very new to us. The doctors originally thought she had optic neuritis, but her latest attack put her in hospital for a week with a three day course of steroids and physio. This has all happened within 6 months. She had her first attack in May, secong in June (both in her eyes) and she has now been diagnosed with rapidly progressing relapsing remitting MS.
Any advise would be very gratefully received.
Hello, Colds and viruses can make lingering symptoms feel worse/more pronounced, but my understanding is that they don’t necessarily trigger new relapses… And my personal experience over the past 10 years is that they don’t, as I have had many nasty bout s of cold, flu etc with no relapse resulting. So, like anyone, she should try to stay away from sick people as much as reasonably possible, but she shouldn’t get too stressed if she feels a cold or something coming on. I would say though, that for a lot of people, UTIs are more of a problem and for me personally go hand in hand with relapses but you can’t catch these from others! I am not on tysabri because I travel a lot and my understanding is that you have to have the infusions on a pretty regular basis each month, around the same date, so it doesn’t suit my lifestyle. I go with a medication that I can take on my trips with me, so that I am not planning my work and holidays around my MS, but maybe for your daughter she could just make sure to plan the holiday between her infusions (and any monitoring tests she has to have). I hope she has a great trip! J
I forgot to add that you can get special travel insurance (contact ms society they might have more details) as your bog standard holiday insurance generally doesn’t cover pre existing conditions like MS. That will give you peace of mind.
I am pretty sure that Tysabri does not affect the immune system’s ability to fight off normal stuff - it’s more specialised, working on just the cells that are involved in causing relapses. However, I’m not on Tysabri myself so I recommend you copying and posting this onto the Everyday Living forum where more people will have personal experience of it. There is no problem travelling to the US, but she will have to miss any Tysabri infusions that clash, so it would be sensible to try and plan it so this is kept to a minimum. I hope it works really well for her 
Karen x
Thanks so much for the feedback. Everything is so new to us, and we were just wondering about the normal things. I will post in Everyday Living as you suggest.
Lisa