im 20 and just been diagnosed with relapsing remitting ms… my first symptom were in November last year and were ear blockage and double vision and I’m currently having a 2nd attack with pins and needles from the waist down and achey feet… my neurologist has suggested I chose a treatment plan but I’m struggling to decide because of the PML risks that come along side tysabri but I’ve heard it’s really effective and would be a much better choice… anyone got any advice?
thanks so much x
Wow, what a decision. Tecfidera and Tysabri are so different. They aren’t just different in terms of how they are administered, but also in terms of the side effect profile and expected relapse reduction rate.
The reason I’m asking is that the difference in these two drugs seems a bit stark. There are other drugs that have a similar relapse reduction rate as Tysabri (eg Ocrevus) but which have very different risks attached.
Not that I think the risks of Tysabri outweigh its usefulness. I don’t; it’s a great drug. It’s just simply having a choice of Tecfidera versus Tysabri doesn’t seem quite right.
Wity regard to PML, yes, it’s a scary thought and one which everyone who takes Tysabri should be aware of. But PML is really very rare. Particularly nowadays as there are very good tests (which everyone who starts Tysabri is required to have before starting).
Have a look at https://mstrust.org.uk/a-z/jc-virus-and-pml This explains that only a person who tests positive for the John Cunningham Virus can get PML. And only then if they have been taking Tysabri for more than 2 years. The test for JCV is now very detailed - there are gradations of risk which are identified by the test.
I suggest you talk the decision through with your MS nurse (if you have one - if you don’t, try phoning your neurologists secretary and ask for the contact details for your MS nurse). S/he will be the best person to help you make the decision.
I know I’m finding it very stressful making the decision but I’m definitely leaning more towards tysabri as I’ve heard loads of people have amazing stories and it’s a lot more effective! Therefore maybe the PML is a risk I’m going to have to take!
Didn’t know about JCV so I will speak to my ms nurse about that!
Hi Elena, have a look on the Everyday Living board, lots of recent threads about Tecfidera. Should prove insightful. You can search for threads using the function at the top of the page. Tec is a great medication in my experience. Good luck.
