So today we saw Dr. Vehe. We talked a lot about 2 different meds, Remicade infusions and Humira injections. I think at this point we are leaning towards the Remicade vs the Humira because of the fact Dr. Vehe thinks the Remicade is more effective for the Uveitis. They are IV infusions that would have to be done every 4 weeks at the Childrens Hospital in Minneapolis so that means more trips for us. We have a week to check with our insurance to make sure they will cover the infusions and then make a final decision. He also made a point to tell me a side effect of both drugs that was quite scary to me! Both these meds can cause Leukemia and Lymphoma!!!! Yeah so I am really not liking this:(. With the Humira its a 3% chance and with Remicade its a 8% chance. Which Dr. Vehe reassured me that even 8% is very small and very rare. I am still very un easy about it. So I think I will be up late tonight doing some research!
The knees seem to be doing ok but the joint in one of his toes was very swollen today he said. So he thinks the new drug will help that. We didn't get rid of the Naproxen as I had hoped.
Jackson will have blood work within the next couple of weeks. He will see Dr. Bothun (for the eyes) Nov. 17th. And be starting the infusions within a couple weeks.
Thanks again for checking in!
Sara
Loss
8 years ago
Oh Sara, this isn't the news anyone was hoping for! I'm so sorry. I know how disappointing it can be when medications don't work like you expect them to. How scary about the side effects of the IV meds, yikes! Hopefully they'll monitor him closely & I know you keep a close eye on him. Thanks for the update, it's so nice to be able to hear the details from his appointments. Talk to you soon.
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