Is tysabri as terrifying as it sounds

[Chezer68]

RR MS for 19 years, 3 relapses in last 12 months on avonex, 2 new lesions on MRI so bloods taken today for jc virus and tysabri due to start later this month. Looking for some feedback from anyone else on tysabri 

[Stumbler]

Hi  @Chezer68 and welcome.

 

Disease Modifying Therapies ( DMTs) for MS are all powerful drugs and each have their own risk profile.

 

Avonex is an "entry-level" or first-line therapy, which has been around for at least 20 years. During those 20 years, medical science has advanced exponentially and there are now a range of more efficient DMTs available. The thinking behind DMTs is also changing - why start first-line and accumulate damage before moving up. So, there now seems to be proactive and conservative Neuros.

 

Tysabri is one of the more effective drugs, treated by monthly infusions. The risk profile has been identified by the clinical trials and you will be closely monitored to ensure your risk levels stay within acceptable thresholds. 

 

As I said above, there are a range of DMTs available, so there is a choice for a treatment that fits your lifestyle. You should be given that choice. Have a look at this website for some assistance with choosing a treatment, that may suit you better :-

 

 

MS Decisions aid | MS Trust

WWW.MSTRUST.ORG.UK

---

Filter, compare and select treatments for relapsing MS

 

 

There is some greater detail here :-

 

https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf

 

 

[Nick]

Hi Chezer,

 

I was one of those involved in a two year study trail by Biogen into the use of Tysabri for SPMS.   One of the good things about having monthly infusions is the careful monitoring process that comes with it.  The risks over PML and the JC Virus should be carefully explained to you, and while there is this 'technical risk' it should be seen in the context of benefits outweighing that particular risk.  During my trail this was explained by the neurologists so that I had a much better understanding of it.  Once again it's a case of trusting those directly involved in your care, rather than 'doctor Google'  

Like all things in life, risks are always present.  I for one was so glad to have taken that risk, if only for the fact that having had regular contact with those involved in my care made me gain a much broader inside into my own MS situation.

 

Hope that helps

 

Nick 

[Chezer68]

Thanks for your comments, really helpful to hear the experiences and views of a fellow mser rather than a medic or info leaflet

[Marina]

Hi Chezer68 and another welcome 

 

Perhaps you'd be kind enough to let us know how you get on? And please feel free to chat about or ask any questions you might have, whether about DMDs or anything else