@joemartinuk 

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joemartinuk

Changing from Tysabri to Gilenya (Fingol

I'm shortly going to change medication from Tysabri to Gilenya (Fingolimod) - due to having a high JCV titre the risks associated with Tysabri are now too high, though it has worked quite well for me. I'm aware of the side-effects but I wondered if anyone else has made this switch, and if so did you experience any changes? Thanks very much
@mikeyj

Joined to answer just this question. DX340 in 2007. Think twice! Fing doesn't have the efficacy of Tysabri. I've read many regrets from those who have switched. I've been living relapse free since 2009 because of Ty. Unfortunately my neuro, an MS specialist, told me two years ago my JCV load was right in the middle of the highest risk area. He talked to me about getting off Ty and switching to Fing. After I declined, he offered a second option that seemed much, much better. He talked about switching my Ty infusion from every four weeks to every eight weeks. Which I did. I've been living the eight week schedule for about a year and half now. Very happy, though it's not all unicorns and rainbow-flavored farts. The one downside is that I notice ever so slightly that I need my Ty infusion around two weeks before I actually get it. My numb areas seem to get exaggerated. If I'm stating that right. Almost like I'm jonesin for my Ty fix. I'm high PML risk, I know that, but in the study that my neuro told me about* the people that switched to an eight week infusion schedule had no instances of PML. Hopefully that'll stay true. Because Ty is kicking MS's arse, at least in my case. Honestly, I don't see why everyone doesn't get put on a six-to-eight week schedule. So in the end talk to your neuro about switching to a six or eight week Ty infusion before switching to Fing. Ty has been a miraculous, albeit dangerous, drug. As long as it's working for you, I say stick with Ty on the longer infusion schedule. Plus it'll cost half as much! I hope this helps you. I know it wasn't the answer for which you were looking. But seeing as I faced the same decision in the past, I thought I'd chime in on your unanswered post. Of course, standard IANAD disclosure applies. *Source: http://www.prnewswire.com/news-releases/extending-treatment-up-to-eight-weeks-with-infusion-medication-shown-safe-and-effective-in-patients-with-multiple-sclerosis-300068953.html

@RachH

Hi, I recently asked the same question but didn't received any replies, so did a search and found your question and answer. Thank you both, I have decided to stay on Ty, possibly on a six week basis. Rachel