Tysabri "holiday", anyone?

[sunnyinsarasota]

I have had MD for 18 years. Been on Avonex, Betaseron, Tysabri, and now Tecfidera. Unfortunately, I'm also on lots of other medications, mostly due to terrible central pain. My neurologist made me stop the Tysabri after 24 infusions because of safety concerns. I felt my overall best while on Tysabri and have asked him if and when I might be able to go back on the monthly infusions. He does not have an answer for me at this point. Has anyone out there ever gone back on Tysabri after taking a "holiday" from it in order to clear your body? My doctor did say that he thought that possibly some studies were being done because enough patients have reported an overall feeling of "well being" while on Tysabri. Any news would be appreciated. Also, does anyone report increased fatigue while on Tecfidera? I am over all of the flushing and gastro upset. Just very fatigued - way more than ever before. I am taking Nuvigil and could not make it through the day without it! Be well and try to stay positive everyone. Mary

[SarahL2491]

Lulu is right on the money with her comments and of course, I started down the Tysabri with JC+, and have completed 25 infusions and am between 1.0 and 1.5 (have to look the number up).

As long as you are negative and its helping; hold your ground, but nicely ask your neuro what his rationale is for asking you to stop at the 24 infusion marker?

Sarah

[Lulu54]

i am going to guess you are not seeing an MS Specialist but a neuro who also treats other neuro disorders.  An MS Specialist should know that you don't have to stop tysabri after 24 months.  The odds of developing PML are constantly changing and yes there is a mark at 24 months that raises some eyebrows.  But the number of infusions alone is no longer the benchmark for stopping this drug.

HOWEVER if you continue to test negative for the JC Virus there is no reason you should have to stop tysabri if it is working for you.  In fact, stopping Tysabri is shown to cause serious relapses and is not something fun to go through.  I would talke to a different doctor about tysabri and get off the holiday idea.

Of course if you test positive for the JC virus, that is a different story entirely.   good luck in working this through with your medical provider.  ~Laura

[sunnyinsarasota]

Thank you Sarah. Hopefully you will begin to feel better once you get to start back on the Tysabri infusions.