Forum

Tysabri and JCV positive

Hi,

I was originally on Tysabri from 2008 to 2010 for highly active RRMS. I stopped the treatment because of a knee jerk reaction following a scare with one of the other Tysabri users at the hospital I was being treated. Nothing came of the scare. It was also at the 2 year point where the risks of PML increases.

I have been taking Rebif 44mg since stopping Tysabri but it has stopped working and I have has a few relapses and an MRI showing new lesions and 3 active ones. The neuro at the hospital I am at now has suggested going back on Tysabri. However, my JC Virus is positive, increasing the PML risk. I was not given the test the last time I was on Tysabri,

I was wondering if there was anyone else on Tysabri with JCV positive? What have you been advised? How long do I have to be off Rebif before statting Tysabri? Ant other helpful information would great.

Thanks, Elaine x

I've just been JCV tested, was given loads of info at the time.  But its a benefits and risks situation.  If the Tysabri is going to make a huge difference to the condition then surely the benefits are worth taking the risks for, and the medical team being aware that you are positive means they will be on the ball and be able to treat if it were to happen.

Elaine,

I dont know if I'm JC positive or negitive I never wanted the test done but had to have it done that was about 3 or 4 weeks ago I dont care what the results are they'll probaly tell me when I have my next infusion which will be my 48th the way I look at it why would I even think twice about coming off Tysabri I was on Avonex before Tysabri and even with that I was relapsing evey 4 or 5 weeks I ended up in a wheelchair with only the use of my left arm double incontinent speech swollow and everything was affected the fatigue was a nightmare.

But since I started Tysabri I've not had a relapse which gave me the chance to fight and get my life back I'm out of a wheelchair walking going to the gym at least twice a week sometimes 4 my bowel control is back I do self catheterise but at lest I dont wet myself I'm stronger and fitter than I ever was and the fatigue has gone that all didn't happen over nite it was after the 2 year mark that I could say I got an almost normal life back I'd never risk going back to that again.

Yes there is a very very small risk of PML but thats very small compared to the risk of how MS its self can leave you I've been there and not to many people can say they've been there and back again.

For me the risks far out weight the benefits

Mark xx

Im starting Tysabri soon so cant help too much... but... I was scared about the JCV and PML thing too... but with all the research I did, I found out that as horrible as it is... it can actually be treated / slowed down etc... I know thats probably not a great help, cause no one wants to get PML in the first place... but just a little addition x

Aah, thanks everyone,

I have decided to give it another go. Don’t think I have much choice really. Like you have all said, the benefits outweigh the risks. I need something to help, things are bad now and with my history they not going to get any better without a better drug.

I felt so much better when I was on it last time so it’s a no brainer really. I have been told that with JC Virus positive my risk will be 1 in 250 but that will be approaching th 2yr mark. The neuro did mentioned giving it a year, which I am happy with. Hopefully, the oral tablet will be approved in Scotland by then?? At least that will give me another option if needed.

Was wondering if there was any people out there who are also JCV positive and what there neuro had advised them. My hubby is in the Army so I have moved around the Uk and Germany. I’ve noticed that there are quite a lot of differences in opinion in Neuros with different things. Having said that, they have all championed Tysabri.

And Mark, great to hear someone be frank re: the dreaded bowels :slight_smile: Mine are a nightmare and it refreshing to be able to just speak (type) it out there. Weirdly, it actually made me smile x

Thanks again x

Good Luck Ellie. I am JCV positive and just had my 4th infusion (where I found out I was positive) I knew it wouldnt change my mind about being on it.

I hope it goes well for you xxx

Hi,

 

I have been on the drug 6 years and JC positive - not proven but my consulatnt thinks the longer you have been on the drug the lower the risk of getting PML. That will do for me! I am better on it then not

 

Take care

 

Amy x