From Tysabri to Gilenya?

[derby42]

I recently had my treatment schedule changed from 4 to 6 weekly in the hope that this will reduce my risk of pml. I'm jc+ and I've been on Tysabri for 5 years in June. I'm now considered high risk  ..1 in 125. I'm not comfortable with this so Im considering Gilenya or Tecfidera instead. Does anyone here have experience of either of these? Thankyou  x.

[Stumbler]

@derby42 , I'm not surprised that you feel uncomfortable about that risk ratio.

 

Have you considered one of the Immune Reconstitution Therapies, e.g. Lemtrada, Cladribine or Ocrevus? You might want to read up on these, https://support.mstrust.org.uk/file/ DMD-Book-Final-WEB.pdf

 

[Nick]

Hi Derby,

 

Nice to see you posting again.

 

You may remember that I was on a Tysabri trail for over two years. So I would not be scared of having to come off it.  To be honest the drug did not seem to have much affect onme and while some of the trail was double blind, I was on the drug for real for a few months. It could be that my progression has slowed down, which may have been the only slight effect. The risk of PML  is definitely something to take into account.  It would seem that possibly you have already been advised that the risk is now too high? If that is the case then the clear course of action is to stop taking the drug.  This is only something to do under the guidance of the professionals. 

AS for a replacement, I have no knowledge of this. I'm no longer on any DMD's and as a SPMS'er I can't see much chance of being placed on any.

 

Hope you are keeping OK 

Nick 

[derby42]

Ive not been advised to stop, my consutant changed me to 6 weekly infusions but only because I wanted to. My ms nurses seem to be advocating Gilenya. My bubble has burst. Ill look into those John.