Entyvio: Dose 6

Entyvio Dose 6

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Another rushed morning.
I thought an early morning appointment would make things easier for the rest of the day but I was just more groggy than usual. My first thought after looking at my watch to realize I was 10 minutes late walking in, was wow, everyone here today is so young. The entire room looked within a few years of my age and in typical millennial fashion, they were all multitasking their day jobs on their laptops with whatever treatment they were sitting for. You would think we would were in a coffee shop, except everyone had IVs hanging out of their arms or hands instead of a peppermint mocha or espresso. I was so curious … what are they here for? Any potential Crohn’s friends?! I still don’t quite have the nerve to ask people that and figure that if they felt like sharing, you would know. It was a nice change of pace from my typical treatment days, but I still prefer when I am the only one in the facility.

I worked out the night before, pretty hard for me, so I was already fairly shaky coming into the appointment. I did the usual – outlined what all I would eat after the appointment and how the day would go. Of course none of that would actually happen. I got home, made a smoothie, Henry ate part of a plant and then waited for me to get home to get sick, which made my smoothie even less appetizing. I finally took a nap, only to wake up feeling much, much worse than I usually do. It felt like New Year’s Eve day all over again. I am sure having the stomach flu or food poisoning or whatever that 4 day spell was, didn’t help my nausea situation at all… but this eventually passed after about 3 hours.

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Typing while keeping the IV straight is both difficult and annoying for me.

That night, I had one of my oldest friends, former roommate of three years, and current doctor, stay with me. We stayed up late talking, which led me to sleep in until 1130a… when my phone kept going off. I was pretty alarmed when I woke up but I obviously needed the sleep! Sleep is so important for me after Entyvio day. I don’t understand why completely, but it sucks the energy out of me completely. Any of you on Entyvio experience the same thing? I understand how it works in theory, but the day it is administered it is hard for me to remember all of these things I have read and learned about because it is so personal to me.

Work, work, work. I am sure many of you are experiencing the same thing in your office, but a chronic cough and congestion has swept the floor, another factor that doesn’t really allow me to live my best immune system life. I feel paranoid, but especially after Entyvio treatment, I run from anyone with the slightest cough or cold. Even the Entyvio website states that this medication will increase your risk of developing a serious infection, and after trying Remicade, Humira, Cimzia, and now Entyvio, I know very well that it is not a “if” but “when” situation when it comes to being exposed to the flu or common cold in the winter time and catching it from someone near you. I am fine with all of this now that I know how to handle it, but it doesn’t stop me from being the most standoffish coworker ever this week. But hey, Entyvio is working really well for me, we can’t mess that up, people! I know they would all be very understanding if I explained why, but sometimes the effort isn’t quite worth it.

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Okay, so it wasn’t my happiest Friday …

Side effects will always be an issue with biologics, immunosuppressants, etc. and a major one is joint pain, which I started talking about in my Dose 4 post. Did you notice I dropped in there that I worked out? I did! It sucked, quite frankly, but was much better than my attempt a few months ago. I still have more joint pain than I am used to, but with the help of a number of things, it has gotten manageable. I am currently also taking sulfasalazine and low dose naltrexone, both of which have been beneficial regarding joint pain and apparently are pretty commonly used for these issues. I can tell that overall, my mood and health is improving because I am eating more, feeling hungry, and also thinking about working out, as in actually wanting to. Big strides for me!

This is a big part of my resolution to keep improving my health condition. Keeping these appointments regular and also keeping up with my holistic treatments like acupuncture and cupping play an important role in maintaining my lifestyle … which reminds me I really need to make an appointment for both. Until then, I am working on deciphering my recent blood work results, which showed great Crohn’s scores! But not so much with the thyroid. There is always room for improvement somewhere, right?!

 

One thought on “Entyvio: Dose 6

  1. I actually had to stop taking Entyvio because the joint pains got so bad. I literally did not want to get out of bed to go to the bathroom. Glucosamine has helped some, but getting off the Entyvio (for me) helped more. Just my personal experience…I know that everyone’s disease is different, and everyone’s response to treatment is too.

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