Nick will be trying Humira soon, we have the prescription, and it should be interesting to see if the EE gets better with this drug.
I know the ankylosing spondylitis may get better, but the doctor at Cedars Sinai had mentioned that Humira sometimes helps the EE. And the rheumatologist at Childrens Hospital Los Angeles thought the two diseases went together.
I have to get Nick some pre-medication scans to chart his progression on the drug, and then I have to sign him up for co-pay assistance, and then we shall see what happens. His AS has been out of control, he's had a lot of flares, and his skin has been involved.
I know he's 20, soon to be 21, but he's still so young, and having to cope with these types of diseases even at my age is horrific, you need help and guidance. Life is not easy when you dont feel good, another reason this child needs my help. It makes me mad when we go to a facility and they make a big fuss about him being an adult and read me the law. Give me a break, I know the law, I know he's an adult, but this process of going on meds, and managing the shots, etc, is not easy. Even for an adult. And Nick is alone, without us. He doesnt have a girlfriend who can help him through this. These people at the doctors, hospitals, etc, make it seem like I'm enabling him. Another give me a break, I'd like to see them tell their 19 or 20 year old son to figure it out himself, be alone and order your own medications, and manage all these documents, and papers, etc. Make a choice about which drug your going to inject into your leg...alone! I can guarantee, these healthcare workers would be just like me!
Time will tell what happens next, I will report the findings, which will require yet another upper endoscopy with biopsies. This will take a lot of time, and I'm guessing until end of the year to have another update!
