I care for my husband,who is 45yrs…and was diagnosed with ms 5yrs ago. He started on tysabri straight away,being told it was the best treatment for him,and also knowing the danger of contracting the brain condition PML…throughout treatment he was monitored carefully…my husband did want to come off tysabri a couple of yrs ago as he was worried he might contract PML…his consultant advised against it …so he just carried on…a couple of mths ago the clinic took blood tests as the % rate of patients have increased who are on tysabri are contracting PML since he has been on it,which is very worrying…my husbands results came back this wk and unfortuneately he is in the high risk area,which means if he stays on tysabri he has a very high chance of getting PML, and if he comes of it will probably get relapse after relapse with no chance of any treatment helping him as hes been on tysabri too long now…he is worried sick and doesnt know where to turn too…i would really like to know if this has happened to anyone else,how they coped and if other treatments helped etc…we feel so let down as dont seem to get a straight answer from anyone.would appreciate anything…iam at my wits end.
Afraid I cannot really help but can I suggest you post on the everyday living board as it is a very busy board and I know there are some members on tysabri who frequent that particular board. Also suggest the helpline might have some information, number at the bottom of the page. Sorry I can’t be of more help but did not just want to read your post and leave without responding.