My last infusion was 3.5 weeks ago, and I have felt the best after this one, more so than I have after any of my previous infusions. I haven't been symptom-free {that privilege is still eluding me}, but I had a full week where I actually felt pretty good. The fatigue is always present, but that is usually the last to go anyway {if it ever truly leaves at all}.
I am grateful that I have experienced minimal side effects from Entyvio. I think because my body has already experienced a biologic {Humira}, introducing a new one hasn't been quite as severe as it could have been. And some of the side effects may not even be from Entyvio itself, but just from the level of chronic inflammation and sickness I have experienced with Crohn's; it's often hard to distinguish. But there have been some new side effects to which I am adjusting.
Forewarning: there's nothing exciting or probably even interesting about this post haha; I just like to have a record of my experiences. And hopefully it can be helpful to someone else on a Crohn's/Entyvio journey, if they happen to stumble across my post.
Hair Loss
I had this when I first started Humira too. But this time has been more severe. I thought I lost a lot of hair last time, but that was nothing. I am thankful that I have a lot of hair as it is, because otherwise it would be much worse. I started getting a bald patch in one spot, and my hair feels much thinner overall. Thankfully, it is finally starting to let up and get better, though I am waiting to see if it ramps up again with my 4-week infusions.
Skin Sensitivity
This is a new symptom. When we first moved to Virginia, I told Mike that it felt like the sun was closer. {I realize that's actually true during the winter, but not because we were in Virginia haha}. But that was the best way I knew how to describe it, because my skin feels like it's burning when I am outside. I cannot be in direct sunlight for very long {mere minutes} before my skin feels like it's burning. Which is not conducive to our goals for spending more time outside! Turns out, Entyvio actually makes you more photosensitive. And plus, I am more prone to skin cancer because of Crohn's. So gone are the days of golden tans and basking in the sun; I have to be much more diligent and careful with my exposure to sunlight. I have also had some severe scalp sensitivity. It’s not a burning sensation, but rather a painful, sensitive-to-the-touch feeling. That comes and goes, but it’s such a bizarre symptom.
Headaches
Entyvio can increase the frequency of headaches. Thankfully, I have not seen an increase in the number of headaches I experience, but I have experienced an increase in severity. I struggle with migraines {probably getting 2-3 a month}, and the last few months have been brutal. I always get the icepick pain, but now I am also getting severe nausea and vomiting. And Tylenol often doesn't touch it. I am waiting to see how these play out as my body heals from Crohn's, because if they don't get better when that part of my health stabilizes, then I am probably going to have to seek out additional treatment.
Persistent Cough
This is also a common side effect, but I am still trying to figure out if this is specific to Entyvio or just because I am taking an immunosuppressant. I am still hopeful that this is just the lingering side effect of a cold I got several weeks ago. That has always been the case: it takes me longer to get over a simple cold, with a cough often lingering for weeks. But this one is still lingering after almost 7 weeks without enough improvement, so I'm not really sure yet.
Feelings of Hunger
I have no idea if this is related to Entyvio or not, but I have noticed that my feelings of hunger are back! I lost it after I started Humira, and it really only returned {somewhat} when I was pregnant. But now I feel hungry like a normal person again! I know that sounds so weird, but it's strangely comforting to feel my stomach growl again :)
Stomach Pain
This could be Entyvio related or not. But within the last couple of weeks, the stomach pain that I experienced last year is back. It's not quite as bad, but it has me at least taking notice. The Lialda has been helping with that, so I am hoping it's just an anomaly that will go away soon. But it has been a reminder to me of how I have seen some significant relief from several months ago. Perspective, right?
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I have another infusion tomorrow, and I have my colonoscopy schedule for next week {lucky me!} I'm hanging in there...still praying for remission!
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