Saturday, August 20, 2016

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.


  1. Prayers for you to find hope and continued strength. Thinking of you always.

  2. Parker, you were so brave to write this. We are so very sorry for your predicament and so frustrated with the insurance regulations. You deserve so much better! Although you are discouraged, we will continue to hope & pray for the miracle we all desperately want for you. We love you with all our hearts ��

  3. Hello Parker, I wish you recover from your health condition soon. Besides taking the help of doctors, you should also focus on what you should eat for increasing your recovery speed. Try 60 ml of Organic Noni Juice every day. It is supposed to give 100% pain relief from joint disorder.

  4. Sounds like your as is really vicious along with other autoimmune diseases. With insurance and I'm sure you have had to do this with Parker it can help if the doctors but also you do a personal appeal as to why the step requirements are not going to work in your situation and what is actually needed as well as how just getting straight to what is needed might actually save the insurance money in terms of surgery, physiotherapy etc that may then be required if you are delayed in treatments. I had to do this for my chronic migraines Tx and I won my appeal. Strange enough is they wanted me to appeal, not my neurologist who specializes in headaches! So I wrote out pretty much what I listed to you and tgey didn't force me through all the other steps. Not only that, tgey approved the desired medicine indefinitely...