Hi everyone

I hope you are all well. Before I start rambling, I have been on Tysabri for six years - and I love it - no side affects, and no major relapses in all that time.

I have a couple of questions for those of you who are JCV+ ... and are ... or have been, on Tysabri.

Can you please tell me what your level is, and can anyone tell me what the safety cut-off level is where you are, for continuing with this drug??????

All of a sudden, my Neuro informed me last Wednesday that the cut-off level here in Australia is 1.5 - and I am 2.406

I believe he went to a conference a week after I saw him in February (he wrote me a surgical referral when I saw him to get a port-a-cath put in). I went ahead with the surgery about two months later - he had access to this info - my levels and the recommended cut-off point, a week after he had given me that referral - but didn't think it important enough to share the information.

Now, I have to decide, do I continue ... use the port that I had put in (which caused me a lot of bruising and pain when I got it put in) and risk even more? Or do I go on to one of the oral meds - which scare me even more than Ty did....and get the port removed? More pain/discomfort? Or, if I stop using the port, go to the hospital once a month to get it flushed, and save it for a rainy day?

Sorry guys - I don't expect anyone to tell me what I should do - I just want to know the acceptable level where you are, and where others are on the spectrum before I make up my mind