Last reply 1 week ago
PML Risk – what is too risky?

Hey!

Ok so I have been on tysabri for over two years now and it has been working well for me. But my PML risk is now estimated at 1/300. So I need to make a decision if I want to stay on Tysabri and move to 8 weekly infusions or consider other treatments – Fingolimod, Cladribine or Alemtuzumab.

What do you think is too high a risk of PML on Tysabri? When have people switched? What have you switched to? How did the switch go?

Thanks guys!

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stumbler
1 week ago

@rainbow , odds of 300/1 seem a bit too short for me, especially when the possibility of PML exists.

This is something that needs to be discussed with your MS Nurse/Neurologist. There is a risk of Tysabri rebound activity when the Tysabri is stopped, so transition to another DMT needs to be carefully managed.


pastglory
1 week ago

@rainbow im on tysabri and my risk of pml is 1 in 140 but im not stopping it until im told to. Your risk is not too high yet and I wouldn’t worry too much about it as you will be monitored more closely and regular mri’s will pick up any signs well in advance. Enjoy the good that tysabri brings..

@rainbow were you on other DMT’s before Tysabri? There are a number of good choices out there today and I would lean towards one of those rather then risk PML if you have an option.


nutshell88
1 week ago

I consider you brave guys
In my case I would never think of havong tysabri in the future afrain of pml

Why dont u think of swiching ti something like lematrada


rainbow
1 week ago

Thanks for all your replies, I apreciate it. I don’t have any one to discuss this this, on a personal level. I know I can talk to MS nurse and neuro, but its good to hear from people who have MS too.

@stumbler yeah ive never been worried before. The odds don’t feel good any more. I will be meeting my neuro and I will ask how the change can be managed.

@pastglory agred Tysabri has worked very well for me, its a great drug. I’m just a bit scared now, i know I would be monitored. They did mention moving to 8 weekly infusions to help reduce risk. How often do you have an infusion?

@californiadreamin Tysabri was my first DMD, I was lucky it worked and I didn’t have to keep changing to find the right one. There are lots out there, my neuro has mentioned Gilenya, Lemtrada or Cladrbrine. I will need to look into them more and see what they are all about. Yeah i think im leaning towards changing. Imjust concered about the transition.

@nutshell Nah not brave! I guess the effects MS can have scare me more. I want to be on the most effective drugs to keep it at bay. With ever relapse ive been left with something, so i want to keep what ive got. I don’t want it to steal anything else.

Thanks again for all the replies xxxx


dvtrv
1 week ago

@rainbow

Hi there,

I was on Tysabri since early 2011 and from negative to a positive 0.34/7 JC Virus since 2015

I was on Tysabri every 8 weeks for some time now but not how sure long, maybe a year or more.

I was recommended to come off Tysabri as my specialist advised they, in my case, are unable to detect PML via an MRI scan anymore.

When I asked what his thoughts were if I chose to stay on Ty, as I’d like, his, as always, because they can’t be seen to be suggesting/recommending etc was enough for me to make my own decision to switch to Mavenclad.

My LP is on Wednesday, not to chipper about it as had one before going on Tysabri.

Good luck with everything and please wish me luck with my LP and meds’ change. Tysabri has done me wonders since the day I started on it and increased my health a million fold.

I’m gonna miss Tysabri.

I’m not one to worry at all but still not looking forward to Wednesday.

I’ll let u know how I get on.


pastglory
1 week ago

@rainbow I was like you after 2 years when my risk was the same as you. But in the last year I got even better and really feeling the benefits. I’m worried too since I became 1/140 risk but have regular mri. I’m supposed to be goin on it every 5 weeks but that hasn’t happened so I’m still on it every 4 weeks. Stay positive and stop worrying. You are being monitored closely.

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