is my tysabri still working

[Daryl]

I have been on tysabri for a long time I think this is my 112 treatment when I 1st started it was like a major boost of energy after treatment I don't get that anymore and have not for a year or so is this normal and if not what should I be asking my Dr.

Thanks

[foxglove]

Still learning-

I'm not a doctor but from what I am learning so far it is my understanding that as the medicine reaches a certain saturation point in your system it can start to stabilize that initial feeling you had of a "boost" and normalize a little more. I might be totally wrong but that's the way I interpreted what I've learned so far. Maybe you can switch to an extended dosing schedule and have the same efficacy/get back that "boost"? Don't worry yet, ask your neuro for sure, best of luck!

[DexterMorgan]

I had the same issue for months, asked my neuro why and she told me 'it's not what Tysabri does, it's for your MS not the fatigue'. But I had a really rude and stupid doctor so yeah. The only thing I can say is that the moment the Tysabri didn't give me a boost was the moment I was JCV+ so that's pretty strange. When they told me I was JCV+ I was like 'yeah I had a feeling there was something wrong because I felt the Tysabri wasn't working as it should have'. They then told me 'you can't feel it when you're positive'.

Maybe you can? Maybe the fatigue worsens and the effectiveness is less when you are JCV+ with high titer values? Who knows! I do believe that the longer you are on Tysabri the more chance you get on a "plateau" where you feel the Tysabri isn't doing much.

[lindaincolorado]

For me I am grateful to be stable at the point Tysabri made happen.
I used to Jones for Ty at about 3 to 3 1/2 weeks. Now I get my infusions every 8 weeks and am doing o k. I started Ty 10/2006. Thank G-d for Tysabri

[Kimba22]

Hi Daryl,

Welcome to MSWorld! But, sorry for the reason you are here. The purpose of Tysabri is to reduce disease activity and slow progression. Whether or not it is still "working" wouldn't be based on that side effect, it would be based on your clinical symptoms and MRIs. If any of these apply to you, it could indicate Tysabri is no longer working.

-Increasing relapses or severe relapse
-Lesion progression by MRI
-Worsening disability (sustained worsening of Expanded Disability Status Scale - aka EDSS - or neurological exam findings)

It's also possible to develop neutralizing antibodies, which would make the drug less effective. A special blood test can be ordered by your neurologist to check for these antibodies. https://www.mstrust.org.uk/a-z/neutralising-antibodies. But, that is often associated with hypersensitivities and/ or infusion reactions. "Persistent (Neutralizing Antibodies) NAbs to Tysabri are associated with a lesser treatment effect and an increased risk of hypersensitivity reactions and/or infusion-related reactions (rigors, nausea/vomiting and flushing). Antibody testing should be performed if NAbs are suspected. The occurrence of NAbs may be transient. If they persist, discontinuation of treatment should be considered." http://mssociety.ca/en/treatments/modify_tysabri.htm

Hope this helps!

Best of luck