Forum

tysabri. too long a 'user'?

Hi all,

I was on the phase 3 Tysabri trial from April 2002 and since a Tysabri patient. I have been relapse free for this time except when the drug was withdrawn over PML scare for 9 months as american lawyers and scientists tried to weigh up the PML risk and weather the trial was ‘safe’ enough.

I know on the mountain of safety statistics that have been thrown at me that the JC virus test increases your chance of getting PML. I like millions of others am “POSITIVE”. I have also been on tysabri for 13 years which is another risk factor.

I am wondering if its worth the risk? Maybe have Alemtuzumab (Campath`) and wipe the utterley broken immune system away and build a new one.

I have an appointment with my neuro soon. His standard answer to me raising similar concerns previously is that tysabri is the best choice for me at the moment.

Really?

Any thoughts?

Andrew

Hi Andrew,

I’m sorry I can’t really help you with this, I’ve only been on Tysabri for 3 infusions (since Nov 14), but I was ‘strongly’. positive before I even started (brilliant start eh!). I have been told 1 year, then a discussion as to whether I can continue and whether the blood tests show a change, and if I’m lucky then up to 2 years.

I have checked the info I was given from the hospital in relation to the JC virus and PML, unfortunately it only goes up for the risks of PML to 6 years (on the chart 6 years - rated uncommon 1-164 chance).

Are you with the Tysabri users uk facebook - there are quite a few on there who have been taking Tysabri for a long time and may have more of an idea. Will find the proper name for you.

I think this is something you will have to be guided by your neuro. As you have been relapse free whilst taking it, it will be a huge shame for you to give it up, however, only you and the neuro can decide which course is best for you. Is your neuro a MS specialist neuro? Sometimes this makes a huge difference.

Hopefully, someone else on the forum has been on it for a long time too and will help you more than me.

Cherry x

Hi Andrew,

The facebook is the UK Tysabri users (Natalizumab), (quite aware you may already know of this, if not hope it helps)

Cherry

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Hi Andrew

I can only offer my personal experience of someone who recently came off tysabri. I was on it for a mere 2.5 years compared to your 13, and I can honestly say coming off it was possibly the worst decision I have made in regards to my MS.

Whilst on Tysabri, I had days, weeks and sometimes months where I didnt feel like I had MS at all. I am one of the millions JC+ and it never really bothered me. Then they developed that titre test which gives a clearer picture of your PML risk, well apparently mine was through the roof and I was strongly advised to move over to Gilenya. That was 4 months ago, I have relapsed and feel my symptoms all the time now. In fact I feel like I did when I had my first big relapse and was diagnosed.

I know some people do do really well coming off Ty, but I would do anything to get back on it. I do feel I maybe rushed my decision coming off in the first place.

Good luck with your neuro appt - I hope it goes well. But given the choice again I personally would think much much harder about coming off Tysabri.

Hxx

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Hi Andrew

I’m in my 7th year on tysabri I’m jc positive and Tysabri has been like a miracle to me I never have had a relapse since I started I’d never give up on it no matter what the risks that’s how I feel about it its got me out of a wheelchair and walking again I have my life back and I’d risk anything to not go there again I told my Neuro who’s happy to let me stay on Tysabri I’d never take the chance even changing treatments no matter how effective unless it was 100%