After Tysabri?? What next?

[SoCalGirl2007]

I was diagnosed with MS in 2007 and used rebif for 7 years. I was doing well until  late 2012. I started having problems with spasticity in my legs. At first I was able to control with baclofen  but it continued to get worse and I started having weakness also. My MRI showed that there were no changes in 3 years, my antibodies test to rebif was negative but I continued to feel worse. In March my dr started talking about tysabri. I was freaked out but desperate to feel better. After waiting for insurance to approve and waiting for rebif to clean out of my body I had my first tysabri infusion on June 3rd, 2014. By the next day I could tell that it was easier to get up and my balance seemed better. I didn't notice anything else but was excited about what improvements I would have in the future. I felt the same after infusion #2 but was hoping for more. After my third infusion I had a bad headache for 2 days and didn't feel any improvements. Fourth infusion was September 2nd, no headache but felt like I was going backwards with my balance and weakness. I had blood work done about 1 week before infusion #4 and found  out last week that my tysabri antibodies test came back positive. Going tomorrow to see the dr for next step. Anyone have this experience of developing antibodies so quickly?  What meds have been offered after tysabri?

[SarahL2491]

slinia, I have tested positive for the virus, even before I started Ty; your neuro will probably keep a close eye on it.

[slinla]

I don't know what I will do if tysabri stops working or if I get the JC virus. I have been on Ty for 6 years. So far I'm doing good.  

[kwarendorf]

Hi SCG -

That they showed up early may be a good thing. From rxlist.com:

"Antibody testing: If the presence of persistent antibodies is suspected, antibody testing should be performed. Antibodies may be detected and confirmed with sequential serum antibody tests. Antibodies detected early in the treatment course (e.g., within the first six months) may be transient and disappear with continued dosing. Repeat testing at three months after the initial positive result is recommended in patients in whom antibodies are detected to confirm that antibodies are persistent. Prescribers should consider the overall benefits and risks of TYSABRI in a patient with persistent antibodies."

As to what comes after Tysabri, for me it's RItuxan (rituximab). After 20 infusions Tysabri stopped working. I switched to Rituxan about a year ago and it seems to be doing the job.

It's important to remember that no DMD is designed to relielve symptoms. Their purpose is to stop/slow further relapses. Current symptoms are often addressed by other meds, but DMD's are meant to slow MS down.

Kyle

[SarahL2491]

I've been on  Tysabri since 2012 and tested + before I started.  Some months I feel better, some I don't.