@Gwenny

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Gwenny

Changing from Tysabri to Gilenya

I have just tested as Positive to the JC Virus, so my Neuro is talking of switching me to Gilenya in 12 months time. Has anyone else done this, I would be interested in your opinions please.

Stumbler

@Stumbler

@BillyBonza , I believe that your JCV status is determined before considering Tysabri. However, your JCV status can change from negative to positive at any time. So, it's a difficult call. All medications involve introducing something alien to your body. And that introduces risk of a reaction, which sometimes can be dangerous. But, that's the purpose of the trials prior to drug approval, to identify these risks. Then monitoring can be put into place to mitigate the risk. But, living is also a risk in its own right..... :wink:

Stumbler

@Stumbler

I wouldn't say that any drug is "pushed" through trials, as there is a defined process. Risks have to be documented to avoid another thalidomide outrage! The trials process is a long and laboured period. Yes, some drugs are poison, but is that not like calling every car a potential murder weapon? Yes, it is our decision as to what we do with our body and the majority of us would like some relief from symptoms and some hope for the future. It's down to whether we want to look both ways before we cross this particular road. :wink:

lynne

@lynne

hi @Gwenny............ i have had rebif, copaxone, mitoxantrone, and like you just come off tysabri and waiting to start Fingolimod w/c 29th sept, nothing seems to reduce my relapses for long. i think different drugs effect everyone differently and am happy to give them a good and keep open minded. have discussed campath with my specialist but its a bit drastic at this stage for me. i will be watching this post for updates and if i can figure out how to ... will addd you as a friend if you dont mind as we seem to be at the stage treatment stage

US-Emma

@US-Emma

Ahem... To get back to the central question- being on Tysabri while JCV positive & needing to switch in 12 months... I was JCV + on Tysabri for 6-7 years. At the time it was the strongest thing on the market & I am more "risk-averse" to MS complications than drug side effects so I kept going as long as my neuro would let me. I tried to fly under the radar & he was so busy it worked. He did ask me to try Gilenya after about 5 years but I had terrible relapses on it & began to have difficult to control high blood pressure (Gylenia affects the heart). I reported the relapses & was told Tysabri treated patients tend to have a lot of disease breakthrough on Gylenia & I requested & was switched back to Tysabri. About 12 months later, I got a high JCV titer of 2.05 back January 2014. I traveled to Germany in April for Lemtrada. So I agree with @mbrsinc over the next 12 months check out your options with Lemtrada for the reasons he mentions. I started a blog on my experience (Lemtrada.blogspot.com) & included a lot of research on there as well. (Go back to early posting in March & April for most of the research) So it is possible but risky to stay on Tysabri for years with a +JCV Ab but it is not needed anymore- Lemtrada is better in effectiveness than Tysabri- my symptoms are reversing- Tysabri was just holding me in a slow steady decline. Being JCV+ you will need an MRI prior to Lemtrada if you go this route. My last infusion of Tysabri was 14 Feb 2014, then MRI in late Match & Lemtrada started 7 April 2014. Your doc may want to wait longer but the MRI is screening for PML if this is neg you should be able to proceed. I did monitor myself for PML symptoms in the first few months after treatment with Lemtrada but am surely out of the woods now. All that being said just know my personal sentiment- I am more concerned about MS disability than drug side effects. I have learned many people feel the opposite. So do what you are most comfortable with. What you are doing now- information gathering- is very important so you can make an informed decision. You are fortunate to have a forward thinking doctor who gave you a year's notice about the change, giving you time to assess your options. Many Blessings, Emma

lynne

@lynne

to the anonymous person why asked about going from tysabri to gilenya .....my 3months free of tysabri is now over and I start gilenya on Monday. so I will hopefully be able to let you know how it goes. I realise I didn't come off it due to being JCV positive but the drug swap is the same

Tabbycat

@Tabbycat

On a positive note gylenia has been good for me and I really don't agree with the comments of some contributors to this post. People should not be frightened off taking treatments prescribed by their doctors. We are all intelligent enough to listen to our bodies, and what works, or does not work for one, will not be the same for all. Good luck with new treatment and keep an open mind!