Tysabri

21 12 2011

I just had one of the best doctor appointments. Seriously.

I’ve been freaked out about Tysabri for a long time and every doctor I’ve talked to hadn’t helped the situation. That drug seems incredibly scary and they had no real data to offer me suggesting that it would be a magical thing. Until today.

Today I met with my new doctor. He is one of the best doctors in the country and he’s absolutely amazing. At the University of Chicago they have more patients on Tysabri than any other institution in the country so they know what they’re doing, and my doctor is an expert on this medication. He is the first person that I’ve talked to that has been able to answer all of my questions satisfactorily and give me the information I need to feel comfortable with the drug.

So here’s the dealio.

Tysabri is a slow-acting drug and will take 3-6 months to really kick in. It works by blocking new white blood cells from attaching to the intestines and causing more inflammation, but it allows for normal immune activity in the rest of the body, which means I will be able to fight off kid sicknesses that I’m constantly exposed to. It also is one of the most stable drugs on the market and research shows that if it’s effective, it has at least an 80% chance of staying effective for over three years. Three years! That’s incredibly long for a medicine. I’ve been on Cimzia for less than two years and I really felt like that had a good life time as far as medications go.

They ran a test to see if I had the virus that causes the scary brain disease and I’m negative for it which means I have a super tiny chance of that side effect. They also said that what people don’t talk about is that PML, the scary brain disease, happens in immunosuppressed patients, i.e. patients who are on meds that I’M ALREADY ON. As in Prenisone and Cimzia. Yeah, nobody said I’m already at risk so I might as well take a  medication that works!

Once they confirm that I’m all good to go they will get me set up for a once a month infusion and I get to go off my Cimzia and azathioprine and will only be on Prednisone as long as it takes for the Tysabri to kick in. I’ll be able to slowly taper over the next few months and then that’s it. All I’ll have is an IV once a month for an hour.  Which is crazy incredible.

I’m feeling really positive about this and so is my family. We are excited about the new doctor and excited about the possibilities that this gives me. He even said that next year a new version of this medicine should come out that should make it even less likely to cause PML, and if all these things stop working, even more new medicines look likely to be ready in the next few years. So if Tysabri works like it should and gives me a three year window, I’ll have even more options to look at from there.

Thank you all so much for the prayers. I firmly believe that they work. If I hadn’t gone to this specific doctor I never would have been comfortable making the decision to try out this medication and it would have made me constantly stressed out and anxious. This is the first doctor in a long time who has looked me in the eye and said, “You’re going to be just fine,” and meant it. How awesome is that?

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2 responses

21 12 2011
Kristie

So happy for you and thankful for good doctors!

22 12 2011
Thomas

Wow I can’t believe nobody said you were at risk before! Although at least it makes taking Tysabri an easy choice. I really hope this works out! I read about the trials and the outcomes seem really good!

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