A Day at the Doctor’s Office, by Parker

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.

Taking a Leap of Faith, One Step at a Time

Parker is working on a blog post to share with everyone about how he “walked the entire walk” and how thankful we are to all of you…but in the meantime, we wanted to share that he is going through some pretty big stuff right now.  Recently his rheumy shared that she believes that he has an additional overlap disease of ankylosing spondylitis.  As we shared previously, his SI joints are complete inflamed and huge on his MRI.  For the last couple of months, his doc has been trying to get a new biologic shot approved (stelara).  Unfortunately, even with an override request it still wasn’t approved.  So, the next step was to get approval for another biologic (simponi).  The bummer is that this med is an infusion which means we will be traveling back again to the infusion room for treatment. 

Parker is really in some considerable pain from the SI joints, and although we tried the nerve stimulator, it didn’t work and had to be removed.  We are going to stay hopeful that the new biologic will be helpful for his SI joints, along with helping his jaw, shoulders, back, hip, neck, knees, ankles and feet.  But we are seriously taking a huge leap of faith with this new step forward.

The biologic that Parker is currently taking targets his systemic JA issues and this included his rashes, fevers, and internal organs.  This switch is pretty scary for us.  His doc has checked his heart and it is good right now, of course that is our biggest concern.  So concerning that Michael spoke up and asked the doc about it.  And instead of saying “what about his pericardia effusion” he asked “what about his periodic confusion”…I wish you all could have seen her face, the hesitation as she tried to comprehend what he said was hilarious (oh what stress can do to one’s communication)…and she replied, “I don’t know what to do about your periodic confusion, but we can check for pericardia effusion and keep a close eye on him.”  I tell you, there are so many moments that Michael makes me laugh, but boy the moment was priceless…we all started laughing.  And oh how we needed to laugh.

So, as we take this new leap of faith, we will be travelling back to the infusion room starting this week.  Please keep our kiddo in your prayers and thoughts.  Much thanks.