Switching to Tysabri

[Jacksmom516]

After my recent visit to my neurologist we discussed changing my dmd.  He feels that Tysabri is the way to go.  I know that there are others here on it or used to be.  I would love some insight on what to expect, how long it takes, etc... Thanks!

[kwarendorf]

My doc is Saud Sadiq. He runs the Intl. MS Mgmt. Practice in NYC. He uses Fetuin -A levels in CSF to determine disease activity.

Kyle

[huffy01]

Can you post your doctor's name that has this test to see if it is working?

[SoCalGirl2007]

I started tysabri in June after using rebif for 7 years. The last year I started having problems with leg stiffness, weakness, and pain. Dr said it was time to change. I just had my 5th infusion and to be honest I dont feel any different than  before I started. I've gone every 4 weeks and I'm usually there 1  1/2 hours. I did experience a bad headache after #3 and started losing a lot of hair after the 3rd infusion. My hair loss has started to slow down this past month. At my 3 month blood work my test for tysabri antibodies came back postive. My dr says that sometimes people will inially test positive and then later negative. He urged me to continue for 3 more months and then to retest. If the test is positive again then I will need to change to another therapy.

[Jacksmom516]

Thanks for all help.  While I have not had any relapses while on Avonex, and we discussed Techfidera and plegirdy, HE felt that the best chance I have for lessening for disability is Tysabri.  The once a month option sounds great and if it helps with disability I am good!  I am JCV negative.

Thanks again.. I will keep you posted on how it goes.

[SarahL2491]

I've been on tysabri for about 33 months and have been jc+ from the beginning.  its the only one my insurance will pay for but so easy, once a month

[kwarendorf]

I was on Tysabri for 20 months. It was my first DMD. I had no negative reaction to it.

The infusions typically took about an hour, once a month. Some infusion centers make you hang around for an hour after the infusion to make sure you're OK. Thankfully mine was not one of them :-)

Your JC virus status will be monitored while you are getting Tysabri. This is done via blood test. The risk associated with being JCV + and getting Tysabri is PML. PML is a rather nasty little brain infection. In addition to monitoring my blood for JCV, my doc also used MRI to watch for signs of PML.

My MS dod not advance, nor did I have any relapses while on Tysabri. I stopped for 2 reasons. The first was that after initially being JCV -, I converted to JCV +. At the same time my doc was able to determine that Tysabri was no loger working. (He has developed a test using spinal fluid to determine if Tysabri is working.)

If I could, I'd still be on it. Instead I have switched to Rituxan...

Kyle

[essdipity]

Not at the Tysabri stage (yet), but I've read almost no negatives about it. While having a couple of steroid infusions I got talking with a few Tysabri regulars who see each other every month. One woman told me she had been an MS mess before Ty, and after starting the drug she had had absolutely no more MS problems. Lots of people here would say the same.

The only issue is whether you are JC negative, which I presume you are.

You go, girl!

ess