Crohn's Chronicles :: Slow Progress

Today I had my first injection for Stelara. I had my loading infusion 8 weeks ago, and from today forward, I will take the medication via self-injection. They require training with a nurse, as well as monitoring for reactions, and today was the first of two sessions.

I was a little nervous; I did Humira shots every other week for 7 years, but it's a self-injectable pen {meaning, I just had to hold it in place and push the button}. But I have always been wary of sticking myself with needles. Mike did all of my PIO injections and all of my B-12 injections. Stelara is a pre-filled syringe, but there are no buttons; you have to actually stick yourself. I knew it wouldn't hurt that bad, but it just goes against every instinct to stick myself! 

Thankfully, the build up in my head was much worse than reality. It actually was very easy! I am still going to have to psych myself up to stick myself, but I think I will get the hang of it pretty soon, and it will eventually just be second nature. But the really fantastic news? I only have to do it every 8 weeks, and it doesn't hurt or sting!!  :)

I'll do my injections in my leg, like I did with Humira

But Is It Working?

So, the big question: is it working? 

The simple answer: it's too soon to know for sure.

I finished taking the steroid taper about 2 weeks ago, and honestly, I started seeing a slight improvement in my symptoms after that was done. BUT, after that, I had a full 9 days of feeling good! I haven't had that many good days in a row in over a year. A year. My previous record was 6 days, and I can count on one hand the number of times that has actually happened. So for now, I'll take that as a good sign and hope for the best!

Any Side Effects?

There are a few side effects that I am monitoring. I am not sure what are related to Stelara, what are related to the transition from one biologic to another, what are related to active Crohn's, or what are something completely random/unrelated that I get to experience alongside all this Crohn's stuff.

• Headaches- I have struggled with migraines since before I was diagnosed with Crohn's. But they have mostly been stress-induced, and not very frequent. This past year though, I have seen an increase in both frequency and severity. Stelara can cause headaches, so I have made my doctor aware and have started keeping a log. I'm hoping that once my body adjusts to the new medication and {hopefully} gets into remission, I will see a decrease in these. 
• Joint pain/body aches- this is a background symptom that comes with Crohn's. And since I have had active inflammation for 22 months, it's no surprise that I have had a lot of new/increased joint pain and body aches. I wake up many mornings feeling so stiff and achy, like I am 70 years old haha, and then basically ache all day. So again, I am hoping this settles down a bit when I finally reach remission. My doctor knows about this one too, as they can help if it becomes more chronic and painful. I don't think I'm quite there yet, but it would be nice to go back to remission-status aching {where I basically ached every now and then and with weather changes}.
• Fatigue- this is also a background symptom that comes with Crohn's, and it's usually the last to go, so I am settling in to have this for awhile. My body is just tired haha. It's hard to describe to people, because everyone in general is tired with busy life. But this is more than just tired. It's an all body exhaustion that really just slows and shuts you down. It's like I hit a wall, and I just don't have the energy to do normal things. It's a constant balancing act in trying to get rest and not over-exhaust myself. I will be checking my B-12 levels when I do labs next, so I am hopeful I will get to go back on B-12 injections to help with the fatigue.

What's Next?

Now we wait! I have my next Stelara injection {and training with the nurse} in 8 weeks, and my doctor will run bloodwork after that. After the 3rd dose, they can measure the amount of medication in my body to see if it's enough, see if I have antibodies to it, and check my inflammation levels. So I keep hanging in there, monitoring/logging my symptoms, and praying that I start seeing more progress. The overall prayer is that I achieve remission on the 8-week interval, hopefully within the next few months. That my body adjusts quickly to this new medication, without any new side effects {and lessening of the current ones}. Until then, praying that I can trust the Lord's timing and lean into Him on the hard days.