LouK wrote:Hey guys,
Well I have had 5 relapses in the past 11 months and I saw my neuro today and he wants me to consider Tysabri. He doesn't feel my current med (Rebif) will be strong enough and my MS is progressing to quickly. I had a stressful year in 2009 and I think that stress massively affected my relapses and am weighing up the pros and cons of Tysabri at the moment and whether I can perhaps control things a little better by working on reducing my stress.
He is quite a smooth talker and bigged up Tysabri. Whilst I appreciate it is a good med for some people and could very well be for me, its the risk of PML and my bad luck that worries me. Plus the fact that it is a more toxic med than the others.
He also said that to reduce the risk of PML, when patients get to the 24 months mark (none have yet the longest Tysabri patient there is at 20 months) they will take a 6 month break from the med to give it a chance to clear out the body and start again.
I would appreciate peoples views on my thoughts and also whether he is right and that 6 months does clear the drug out of the body and allow you to start again?!
yonderboy wrote:Biogen just released more info on a JC Virus antibody test that they 'say' will be available by June of this year. Apparently they tested it on the 11 available blood samples of people who developed PML while on Tysabri, and got 11/11 hits. They went further to suggest that in their tests on the general population, the JC Virus is 50 -60% prevalent vs. the 90-95% generally accepted. So if you get tested, and don't have JC Virus antibodies, it follows that your chances of developing PML are 0 - unless of course you pickup JCV in the meantime...
I have had CCSVI procedure and am still on Tysabri. I hope to go on "holiday" after my next infusion # 11 or at least # 12 in March. I want to see how I feet for a few months without Ty.
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