I mentioned back in December that my GI doctor was leaving the practice, and that I would need to find a new one. I was able to ask around for some recommendations and ended up with one who happened to be in the same practice as my old doctor. While I would have preferred to find a new office, I decided to give her a try, as I knew the transition would be easier, and I could always look elsewhere later, if needed.
I am so glad that I did! I really like the new GI. She spent a lot of time with me, was thorough, listened to all of my concerns, and truly wanted to get at the heart of my issues. As I shared about all of the side effects that I have experienced while on Stelara, she immediately wanted me off the medication. In her mind, there is no reason for me to have felt so bad for so long, remission or not. In addition, she was not convinced that all of what I have been experiencing are actually side effects. Given my symptoms, my intermittent flares, and the inflammation they found on my MR Enterography last year, she is wondering if perhaps the Stelara is not working as well as we think, and that my symptoms are actually my Crohn's manifesting itself.
We did have the conversation about insurance*, and how I don't like to jump from medication to medication too quickly, given the fact that there is no guarantee any given one will work, and that there aren't an endless number on the market. And I am so grateful that she listened, and we could have a productive and respectful conversation about all of it. I absolutely hate being on Stelara. But I hate active Crohn's more.
*Back in April, I found out {completely by accident, not because the insurance actually informed me} that, staring in May, they were going to stop covering my medication. As in, it was not going to show up on the covered list of medications on our insurance plan anymore. Which, let's be honest, they haven't been paying for my medication since January, when I signed up for the Johnson & Johnson financial assistance program. But now, there is no insurance backing, and the drug company fully pays for it. For now.
So our plan of action was to run some tests and see if we could gather some more information and get a better picture of what was actually happening before making any decisions. Fair enough.
Bloodwork
First up, she ran some routine and extra bloodwork. My inflammation markers are normal {again}, but she said that doesn't always give us the full picture, and that I shouldn't always rely on that alone. I can also, thankfully, say that I do not have Lupus.
But again, my chloride levels were high, and my carbon dioxide was low. This has happened repeatedly on bloodwork, and I have had a couple of doctors dismiss it. She didn't mention it, so I do want to follow up on it.
DEXA Bone Density Scan
I can now add to my list of "old lady" tests a bone density scan haha. The test itself was super simple: I just had to lie on my back and wait for the machine to take a picture, and then I was done. Thankfully, the results came back normal. Which is a huge relief, considering my age.
MR Enterography
She also had me repeat an MR Enterography. After my experience last year, I was a lot more prepared for this one. The experience was very similar, and my body reacted the same way to the Breeza. But since I knew it was coming, I was able to keep myself calm and not panic before the scan haha. And thankfully, I made it through this scan without any issues.
Thankfully, everything came back clear. There was no inflammation on the results, no indication of Crohn's Disease. Which is fantastic news!
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So it seems like my symptoms are the side effects of Stelara. The migraines, the muscle and joint pain, the fatigue...all side effects. The intermittent flares could still be Crohn's-related, but Stelara keeps them controlled. And for now, by God's grace, Stelara is keeping me in remission.
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