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

i'm sorry lynn. i don't know enuf about any of this to venture an opinion.
but...i wanted to say i'm rooting for you, whatever decision you make.

you're good at getting info and putting all the facts together.
why do you have to go to the hosp? can't a visiting nurse come to your home to flush the port? or are things different there? here anything would be cheaper than going to the hospital.

good luck and let us know what you decide.

Thanks to the Australian health system, going to the public hospital to have it flushed (or to have the infusion) costs me nothing (our Medicare System is very good in that respect - and the drug itself (Tysabri) is on our PBS, which means that it only costs me around $34 a month.

It would just be a pain in the neck to have to get it done every month if I am not using it.

I know that there are several other JCV+ peeps on the forum, and I was hoping that some of them may be able to share their levels etc with me.

Thanks for your good wishes

Lyn, I had my 80th infusion yesterday and my titer was 2.49 the last time I was tested which was a month ago. 3 months prior it was 2.48. I will checking it every months.

I asked my MS neurologist your question yesterday and she said it's too complicated to give an opinion to someone she hasn't seen because they factor in a lot of information in making that decision here in America.

I hope you don't have to give Tysabri up. Best wishes.

Thanks Jtwin

I am looking for reasons to stay on his drug - but remembering that should the worst happen my DH will be the one taking care of me.

I think I will suggest another test (my level was based on a test in 2012) and maybe a longer interval between infusons will help.

I am so paranoid about the other drugs - they all seem to have diarrhea as a side effect - and I seem to have enough trouble not 'disgracing myself' as it is - without promotion .

I know in the clinic I go to they are moving people who are JCV + onto 6 or 8 week cycles. I can't give you an answer about whether to stay on it or not but I would keep the port in even while you try switching to a pill. You never know if you will have to or want to go back to Tysabri. Obviously if you can tolerate the pills and don't have relapses you can then pull the port. But don't rush that decision. Good luck Lynn!

Lynn - I don't have any advice as I am not on Ty and have never been tested for JCV. However, I know this must be a tough decision for you whether or not to continue with Tysabri or not. I support you in what ever you decide. Let us know.

Thanks guys

I think the first thing I need to do is request another test - just so I know exactly how large the elephant in the room really is, and take it from there - discussing the benefits of Ty as compared to the other meds (I have read tha t although better tolerated, and with a lower drop-out rate Aubagio is not a effective as Betaseron - so there you go!!) and discuss the merit of taking a longer time between infusions. Who knows - being a bit of an ostrich at the moment

Cheers

I was neg before they had a range, last year was pos at .6 few months ago .8
I know people at 3 still getting Ty, my neuro warned above 1.0 but i'll keep taking it.

friend of mine raised the question- "does time between infusion & jc test effect #?"
Next time i see a dr i'll ask for 2 jc orders & have it drawn day before & day after Ty. Feel free to beat me to it.