Tysabri Check In, Support and Information Part Three - Page 36

DizzyLizzy · 05-07-2013, 09:11 PM

Well I am officially having my first 'relapse' since starting on Tysabri on Jan 15, 2010. Had an MRI last Wed and got a phone call on Friday afternoon telling me that I have 4 new, active lesions . I see her for a consult tomorrow and also have an infusion scheduled 30 minutes after that (#41)

I have no idea what to expect tomorrow. I guess I have just become so accustomed to being stable on Ty, that I honestly have not considered being off of it.

I am having little twinges of panic tonight...

SallyC · 05-07-2013, 09:55 PM

So sorry Lizzy, I hope it all turns out for the best for you..

DizzyLizzy · 05-08-2013, 08:28 PM

I saw the Dr. today and she prescribed 5 days of IV Solu-Medrol, and I started that today. She postponed my Tysabri for two weeks and does think I should continue with it and monitor with MRI every 6 months.

She also ordered running blood work quarterly, a follow up with her nurse in 3 months and a follow up with her in 4 months.

Since I am still feeling like I want a nap and I'm going to take advantage of that since I may not sleeping so well in the next coming days

i am really hoping this does the trick...

Natalie8 · 05-17-2013, 02:56 PM

#40 going in my vein now.

Grammie 2 3 · 05-21-2013, 03:36 PM

last Tues was #81

Linda

Natalie8 · 05-22-2013, 12:36 AM

Amy, did the steroids help your relapse? How are you doing? Still staying on Tysabri? Hope you are feeling better.

DizzyLizzy · 05-22-2013, 11:46 AM

Yes, the steroids have helped me quite a bit Natalie, thank you for asking.

My mood is better which is helping me to get out of the house more! I am trying to get out every day, even if it is to walk around my building. I actually went out both Saturday and Sunday! I met up with @ 20 high school friends on Sat night and we met at a local bar/restaurant and listened to really bad karaoke

And then on Sunday, I took my daughter to see the 'Rock of Ages' musical at the Orpheum Theater and then I went to a high school dance performance that evening! I could not believe that I was able to keep up! It felt wonderful!

I am going to stay on Tysabri, especially since I am still testing negative. I'm actually getting my infusion right now, it was postponed for a couple of weeks.

Amy

Natalie8 · Yesterday, 12:54 AM

Yeah! I'm still negative for the JC virus even on the super specific NEW test. I was a little worried I would sero-convert. I think this may be the 4th or 5th test now. 6 more months of Tysabri guaranteed! Woohoo!