Evening, I was wondering if anyone could help me. This past week I went for my 4 weekly tysabri infusion and got told some difficult news. Ive been on tysabri since feb 2019 and only ever had negative JC virus. All of a sudden its jumped to positive at 3.27. My MS nurse spoke through the options ect, but I feel so low and upset.
Has anyone else had this?
If so what helped you lower your risks of developing pml?
Pml is what scares me the most im 36 with a little girl who im worried for at the moment. She knows mummy has a illness and can get easily tired. I just dont think shes ready to actually understand. Another ask how did you explain to your children about your condition?
I am heart broken i just dont know what to do next.
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I am sorry to hear this. Are you on the UK Tysabri Facebook group? Lots of relevant experience on there.
Hi,
I’m not on Tysabri so can’t comment on the JC virus issue. But I’m so sorry, I can see that’s really bad news and it must be hard to decide what to do.
On explaining to children, I wonder if you’ve answered your own question, a bit? You say you don’t think she is ready to understand. You probably know, more than anyone, what is best. She knows what is appropriate for her - that you are ill, that you can get tired. Eventually you may decide to tell her more, but there are ways to put a positive spin on things. Mummy has an illness, but the doctors are doing their best to look after her.
Perhaps now is not the best time to confront this, though, when you’ve got other things on your plate. Presumably you have to decide whether to switch DMT, and if so, how/what to?
Evening Alison, I think i did join this group, ill have a look and see what i can find thank you. If it wasnt ill see if i can find it 
Hi Leonora,
Thank you, shes knows I’m poorly and get tired easily. She always asks, but past week ive been easily upset and in floods of tears that she has witnessed on many occasions. I try save it all in untill shes gone bed and unable to see me this way.
Maybe I worded it wrong abit, I was after abit of advice how people have explained their condition has slightly progressed. Obviously not untill ive had confirmation from another set of bloods and a MRI luckily I had booked same day as my infusion. As you can imagine its all been alot to take in for myself and trying to tell family and work its been quite upsetting I can never hold back the tears.
Claire
Hi. The same thing happened to me. Was on Tysabri for about 3 years and was constantly getting negative blood tests, and my MS felt like it was the best I have felt in a very long time. To the [oint where I could take my dog out for a walk and have a little run with it. Became positive a year ago and had to switch to Ocrevus and now I’ve felt like I have regressed mobility-wise.