So we went to the doctor Tuesday and
well it didn't go well. First, I saw the doctor and she told me that there
isn't one drug out there that will do what we need it to do for me. She said in
order for me to feel better, I need to be on two biologics. The preferred ones
being Ilaris and Cosentyx. The main problem now is insurance. One, they won't
approve more than one biologic for me even if that makes me better. Two, I'm
currently on Simponi and the insurance usually won't switch drugs until I get 2
more doses of Simponi.
This creates even more problems. One
being that this drug is taken every other month, meaning it would be 4 months
before I can stop taking it. Another problem with this is that the Simponi just
straight up doesn't work for me. Also my doctor told the two month span between
infusions is tough on many kids. She said she could try to get the insurance to
move my dosing to once a month so I can be done sooner, but that’s still 2
months before I would stop taking it. So she is likely going to take me off of
it all together since my systemic issues are returning and those issues are
more dangerous.
I was also told that my SI joints are
doing very bad. She said that even if the nerve ablations work and the SI
joints don’t hurt, they are very inflamed. Now normally I don’t care what my
joints look like as long as they feel good, but this time is different. My
nurse told me that if we don’t treat it soon (meaning switch to a med that
WORKS) they could be permanently fused and I would walk hunched over for the
rest of my life. I know my doctors are doing the best they can but I can’t help
but feel hopeless.
We even talked about the NIH (national institute for health) and my doc is willing to try to get me in. But she felt that because I am such a rare situation and there aren't many like me with these overlapping conditions that there isn't enough of a sample size to do a study. That was hard to hear.
My doc told me she prefers to take me
off the Simponi and fight to get back on Ilaris. Ilaris is an IL-1 blocker and
that is what is needed for my systemic issues with fevers, rashes, and internal
organs. However, I really also need a
TNF blocker due to my ankylosing spondylitis, which is inflaming my SI joints
and causing my back and neck issues. I
just hate insurance right now and I feel hopeless. And I was finally feeling
like I was #strongerthanja.
