Tysabri - am I being unreasonable?
I had my JCV test on March 4th and was told that once the results were in someone would call me with the results so I waited and no call (but I was told it could take a few weeks as they are sent away).
However a letter landed today with an appointment for my first infusion tomorrow! Not much notice, and no word on the JCV results.
So I rang them and they couldn't find my results and all the nurse could say was "well there is virtually no risk in the first year anyway".
I have waited all day and no one rang back with the results and I even tried ringing them but only got an answer phone.
I was just wondering what would the MSers on here do in my position? I'm at a loss. My MS nurse line isn't even open tomorrow.
Do I just turn up hoping someone has the results and then I'm in an awkward position if they are high risk and I say no to treatment or there is no results there at all.
I can understand your concern, but I would think that they should have all the information for you when you go for your infusion.In addition they probably would have informed you straight away if you were positive. I was not checked to see if I had the Jv Virus when I started Tysabri. In fact I started it from the very beginning when it was a trial drug. I obviously get blood tests done now, and sometimes I am positive and sometimes negative, my doc said it could be a false positive. All I know is that I have been on the drug since 2001 have only had one relapse since then,when they stopped the drug for 6 months. So for me its a miracle drug, yes I do worry about the side effects but I wouldn't like to stop taking it now unless I had too. I hope all goes well.
@laurabeebee , there are risks with all of the DMDs we take. But, the risks are known risks and you will be regularly monitored to mitigate these risks. Have faith in your medical team that they are working in your interest. :wink: