Similar to other biologics, the timing between doses of Entyvio gets further and further apart as your body adjusts to it. As your GI tract begins to change, your body is hopefully begins to be able to adequately defend itself. This time, 4 weeks went by between doses… and next time, we wait 8 weeks. Historically, this has been where my body begins to resist treatment. With prior treatments of Remicade, my body responded well at first, but never was not able to make the 8 week mark consistently. With others, like Humira and Cimzia, well, they never helped in the first place. However, fingers crossed, so far… Entyvio has been working really well.
In the few days leading up to my treatment, I began experiencing symptoms I had not felt in awhile. While I’m not sure what caused the sudden bloating and pains in my lower right abdomen, I think the joint pain was most likely connected to the medicine or the disease in general. It’s not shooting pain, just pain throughout and specifically in my knees and elbows. Has anyone else shared a similar experience? As the week continued, it mostly just manifested in the knees.
Treatment/Post Treatment: As the treatment was finishing, I felt the headache begin to set in. It was pretty intense and made me extremely short tempered, but this symptom subsided as the days continued. The nurses ended up slowing the administration of the medicine again so it now takes twice as long. I always feel a small amount of sadness during treatment when I can see how beautiful it is outside and then I look down and the medicine is just pumping through the IV and I know my day isn’t going to be as full as it could be. However, I have been reminding myself I’m doing this now so I can spend more time out there long term. My effort at optimism! The fatigue afterwards is the hardest part to deal with for now, but at least I’m not nauseated and I got the comfy chair – so I’ll consider it a win!
The Next Day: Optimism gone. The next morning I woke up feeling like I had been hit in the back of the head with a large object. I had some achy joints, but still no nausea. As the day went on, things went up and down, but ended on a high note as I continued to the sleep it off after work, I finally woke up feeling more like myself.
Diet Influence: What I eat during these flares is pretty important to my well being. Admittedly, I had gotten lazy with my diet, eating things I knew I shouldn’t (the occasional pizza, burger, etc.) Now I am getting back on track and finding some new recipes to spice up my life during a flare. I have found that during flares, having at least one of my meals be either a shake or soup helps ease digestion for the day. The last few weeks I have been trying to integrate some new things into shakes that I haven’t tried before like cauliflower, papaya, etc. Luckily with the nausea subsiding, I’m able to cook and eat more, so here are some new things I made after my infusion!
Also, please note how dramatic Henry is when I am not paying attention to him.
Quinoa Mini-Burgers: Quinoa has been such a great substitute for pasta. Anyone who knows me knows I used to adore pasta to an obsessive status, so giving it up kind of sucked. I also was a vegetarian for 5 years. Today, I substitute spaghetti squash, zucchini, or quinoa for pasta and really love a good steak. Oh how things change! When I’m having a flare I have a difficult time eating a lot meat, even though I know I need the protein. I wanted to find a good alternative that was easier on my stomach and I think I found one! These seemed pretty involved at first, but ended up being extremely easy to execute once I got started. I originally got the idea from The Iron You, but decided to adapt it a bit to add some different flavor and ingredients.
If you are interested in exactly how they are made, let me know and I’ll post it!
Update – Recipe for Orange-sicle Smoothie: (serves one)
- 1/2 Papaya
- 1/4 White Peach
- 1 pineapple spear
- 1/2 cup of vanilla greek yogurt
- 1 tsp of chia seeds
- 4 ice cubes