The Next Step....

It's been 6 months since I was diagnosed with Ankylosing Spondylitis. It hasn't been an easy 6 months but it has been filled with peace. Although I would have never asked for such a despicable disease, I know I'm right in the middle of God's will for my life and there is nowhere else I would rather be. I am grateful to finally know what's going on in my body and have a doctor that understands my condition and is working with me to help me feel better. I've been on multiple medications and had some pretty horrific side effects to some of those but my doctor has recently decided that I am ready for the next step in my treatment plan which is infusion therapy. It took a while to figure out all the mumbo-jumbo with the insurance but, I will have my first Remicade infusion tomorrow. 

Remicade is a chimeric monoclonal antibody biologic drug that works against tumor necrosis factor alpha. (That's the scientific way of saying it will suppress my immune system so my body will stop attacking itself) It is used to help control the symptoms of Ankylosing Spondylitis and slow the progress of degeneration and fusion in the spine. Remicade, along with several other drugs I am taking, will hopefully be the perfect cocktail to help reduce the inflammation in my body and cause my immune system to stop attacking my spine. There is no guarantee it will work for me, as with any drug, but I have read so many positive stories that are very encouraging. I've also had 2 doctors agree on my diagnosis and this line of treatment! So, I am believing that this cocktail is the perfect one for me. I will start the "loading doses" tomorrow and will continue the loading doses every 2 weeks. Once those are complete, I will get an infusion every 4-6 weeks. 

 Some AS patients have felt improvements after the very first loading dose. Others say it took several cycles of infusions before they noticed a change in their symptoms.  Some patients have been receiving Remicade infusions for 15 or more years and it is still helping them. Others say their bodies began to recognize the drug and it no longer worked for them after only a few months. Some people get almost complete relief from their symptoms while others only see some improvement or relief only last for a week or two. There is no way of knowing how my body will respond or how long it will help me but, beginning this course of treatment is a HUGE deal and something I am incredibly grateful for.

This picture shows 2 patients that were both diagnosed with Ankylosing Spondylitis 25 years ago. One of these men began biologic drugs, like Remicade, soon after he was diagnosed. The other man did not. It isn't hard to tell which is which, is it? The patient who has obviously been more harshly affected by AS shared these photos in an AS facebook group to show the incredible impact biologics can have. He encouraged every AS patient to get on a biologic drug as soon as possible. 

I hesitate to show this picture because its scary and I'm embarrassed by it but, this is part of my journey and my story so, here it is....

The photo on the left shows the effect AS can have on the neck and upper back. The right side of the photo is me. When I saw this photo for the first time I felt sick to my stomach. Seeing this made it the severity of this diagnosis suddenly very real. It's proof that starting biologics is critical for me. 

As soon as the doctor prescribed Remicade I began asking people to pray that it would be approved and I could get started quickly. God heard their prayers and my cries. Most AS patients get denied by insurance because the infusions are so expensive but I just have to pay a copay! My Father did that for me!

The infusions will take 2-3 hours and are done in a cancer center or infusion center. The days following an infusion will most likely be rough. Some people feel terrible and sleep for 2 days straight. Other people get a terrible headache and feel like they were hit by a bus. Regardless of how I feel, being a mom with 4 young kids and recovering from an infusion is sure to be difficult. I will have to get infusions for the rest of my life most likely, but I feel so blessed to live in a time and place where these drugs are available. There is such much hope-- even in a very dark place! I praise my Jesus for getting me this to this step and walking with me every step of the way.

If you feel led to pray for me and my family, here are some specific ways:

Please pray that....

My body will be receptive to this drug and I will feel relief.

AS will slow down significantly in my body.
 I will have minimal or no side effects.

I will have an increase in energy and a decrease in pain.

Recovery days will not be stressful for my family and that I will be able to rest.

My children will not be negatively affected by infusion days or recovery days.

And while you're at it....

A shout of praise to God because my insurance did not object to this treatment and Bryan works from home 3 days each week, which makes this so much more doable!

Thank you for praying and following my journey! It means the world to me!