Quote:
Originally Posted by krohe
I had my 36th and last Ty infusion in October 2009. My neuro and I agreed to stop Ty because the 'adverse effect' information released by Biogen had ceased. We could no longer make an informed, educated decision to stay on Ty. I had done very, very well on Ty, to the point that most days I almost forgot I had MS!
I started Copaxone at the end of December. I had no complaints or issues with the daily injection. Thank God for the auto-injector!
I had my 6 month follow up MRI last Monday. The neuro called me on Thursday to say he needed to see me "sooner rather than later". Seems as though my MRI is lit up like a Christmas tree again- new lesions, many enhancing, a lot of disease activity. My MRI was very active in the first 2 years after my 2005 diagnosis.
So, he wants to talk about going back on Tysabri.
I'm a little freaked out about the whole thing. I was so hoping that the Copaxone would keep my disease activity in check.
Do I risk PML and feel oh so better? Does the # of infusions count start over because I have been off of Ty for 6+ months? Do I refuse Ty and continue down the slippery slope of progression?
Any advice or suggestions are appreciated.
I meet with the neuro today at 1 o'clock. Please wish me luck and send good vibes my way.
Be well,
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I'm sorry I didn't get here in time to answer this because I had this discussion with my neuro last week when we talked about the assay and what he would do for those who test positive. My doc said he envisioned people going on and off Tysabri as needed, that your system clears it naturally and that his patients are back to normal immune status within 90 days at most, so theoretically, you could go back on after drug holiday with good results. He said that he hasn't seen any one of his patients who chose a drug holiday have antibodies when they returned to Tysabri but that it could be a concern for some.
Is your doc involved in the assay testing?
If you are looking for personal opinions, if it was me and I had been off for 6 months and saw the same results, I'd be back on Tysabri in a heartbeat. I'd also consider doing infusions on a longer time frame, maybe every six or eight weeks as opposed to every four weeks. I am not hung up on time anymore, since I know that the every four week schedule is just what they tested, and that a longer time frame may work well for some of us.
Let us know what happened will you? I'm pulling for you!
