You know, normally I am pretty mellow and laid back about all of my health issues. After 8 years, I pretty much take everything in stride and I don’t spend a ton of time dwelling on the day to day symptoms or impact. However, sometimes I’m flat out not given much of a choice.
Here’s an update for you that is a tad more serious and involved than most of my other health updates for the past couple years. The reason for that is basically because this health update is culminating in needing a brand new treatment plan at the end of all of this. And realistically speaking, I have been more positively managed symptom-wise than I even realized for the past 3 years.
This all started back at the end of November, early December, of 2019. My last infusion of Actemra was the first week of November. I was due for my bi-monthly bloodwork to check liver levels, disease activity, and inflammation levels at the end of November, coincidentally right before my next scheduled infusion at the beginning of December. That bloodwork is what kicked off this next 4-6 months of what I can really only refer to as a living health hell. We’ve known that Actemra could cause elevated liver levels, but for 3 years and regular checks, I’ve never once had any issues or alarming numbers, until now. That bloodwork back in November was outstanding when it comes to inflammation levels and disease activity – no surprise there, Actemra worked really well for me for 3 years for my Rheumatoid Arthritis and Spondyloarthritis. But my liver levels on the other hand were 2-3x the levels that they should be.
The first response to this was to skip my December infusion and get my bloodwork re-done in 2 weeks. Okay – no big deal, we’ll just take a break and go back to normal in late December or in January. Well, that bloodwork 2 weeks later was even higher for some levels, and no change in others. The next step was getting an ultrasound of the liver and getting referred to a GI doctor – at this point, my rheumatologist wasn’t 100% confident we were dealing with a medication side effect anymore and concerned it could be something else. Cue the ultrasound, fatty liver disease and an enlarged liver to twice the size of normal. Normally when people talk about fatty liver disease it has to do with alcohol and cirrhosis; however, I obviously don’t fall under that umbrella in this case. 1) I don’t drink – like, at all; and 2) cirrhosis is an extreme late stage liver disease. So in this case, I would be considered as Non-Alcoholic Fatty Liver Disease, or NAFLD.
NAFLD can be caused by a number of different factors, like obesity, medications, diabetes, genetics, autoimmune diseases, rapid weight loss, and more. I actually fall under a couple different possibilities – because of my rapid weight gain from steroids 3-4 years ago, the weight plays a role in creating an ample environment for NAFLD to develop. However, because my lifestyle is healthy and my weight gain was not lifestyle related, obesity isn’t the cause and sole reason for my NAFLD. On the other hand, we still don’t concretely know exactly why my liver levels remain elevated and out of whack.
Back to the tests and delayed infusions/medications – I was able to get into my GI doctor in early January, and he ended up having a few different theories. The largest one though, and what we are still “going with” for lack of a better phrase, is a drug-induced liver injury. In simpler terms, that basically means what I’ve been referring to in this entire post in that continued necessity of medications to manage chronic diseases is having adverse impact on my liver function. So what we did was give it another 4-6 weeks to get the infusions 100% out of my system to see if it was limited to the Actemra, or if it was just medications overall, and then re-do the liver levels bloodwork. The GI doctor then recommended – let’s do a liver biopsy after that bloodwork if the levels aren’t back to normal, because that would tell us that the bloodwork might be missing something and/or there could be something non-medication related going on.
Fast forward to about a month ago, and the morning I was due to get those liver levels re-checked in my bloodwork, I woke up with some crazy, severe right side pain. Thinking I could play Dr. Google, I tried to WebMD Symptom Checker my life away. With every search result ending in the same fate, I woke up my husband and described it to him. He was immediately like: “Ummm…. yeah, I feel like we should go in.” If you know him, you know that’s not his usual mojo so I was like, “Oh! Okay then. We’re doing this.” Fast forward to the ER thinking it was either Appendicitis or a twisted ovary (not going to lie, I was 3,000% more worried about the ovary than the appendix. hello! I need that organ way more!). Thankfully it was appendicitis over the twisted ovary, but that meant I went from a 5am painful wake-up call to a oh okay, I’m getting surgery today in the span of about 7 hours.
SO! No news is good news as far as an appendix surgery goes. It went as smoothly as it could have gone and I was in and out of there literally the same day (I know – crazy!). The first few days were pretty dang painful, but then gradually it got a lot better and we are now at about 5-6 weeks post-op and about 80-90% back to normal!
Needless to say, that delayed the original re-check of the liver levels bloodwork about 3 weeks, so I got that done and we saw good news and bad news. The good news was that a handful of the liver level tests came back at a 50% decrease (!!) – woohoo! The bad news was that one of the liver level tests came back with an increase (WTF). So this still leaves us with needing to understand exactly why this is happening, needing to run more testing, and oh hey, yeah over here, yup, I’m still off of all my meds. Cool.
There’s something else that has been happening throughout ALL of this that needs to be mentioned and explained because it has also played a very large roll in my health, my quality of life, and overall the delay of basically everything in finding out more information and getting back onto different medications to find a new “maintenance-mode.” Since I stopped my Actemra infusions back in November, I have gotten sick in some form or another a full-on six times. And we’re not talking like I maybe have a tiny tickle in my throat, we’re talking like multiple bouts of influenza, days on days of 102+ fevers, etc.
Here we go. While I dealt with trying to figure out the liver levels, being off of meds in general and feeling horrific because of that, and then, SURPRISE, getting emergency appendix surgery – I also was dealing with basically spending almost the entire winter ill. It started with Norovirus, then with a Sinus Infection, then with Influenza, then with a Chest Infection, then with Influenza A, again, and now with another Sinus/Head Cold/Respiratory Infection. Out of the past 19-20 weeks, I have spent approximately 10 of them sick with one of the above.
I’m over it, ya’ll. Really fucking over it. And it’s not over, that’s the bad part. So I currently have a respiratory thing/head cold, whatever, and my liver biopsy is again delayed because they won’t do it until I’m healthy again. Doc – I’m not sure that’s going to happen this year! J/K… but seriously.
Should we throw another wrench into the game? Why not, let’s do it, just for funsies. Enter – COVID-19. Now, I don’t need to say much about this I don’t think because the media (for better or worse – probably mostly worse) has done enough of that for us. However, here’s the concern while trying my hardest to remain realistic and grounded on the whole matter.
It’s a whirlwind, everyone. There isn’t a great deal more to say from an update perspective other than to summarize: I’m still waiting to get the liver biopsy; I’m waiting to hear back from my doctors on if I can start my new arthritis meds amid current illnesses and COVID-19; It’s just another day in the life. #chroniclife
If you know me, you know that 99% of the time I really take all of this in stride. I won’t lie – it’s been a really rough winter – every time I turn around I’m sick with something else, or my tests are delayed for another reason. But I also know that there is really nothing I can do about it from a complaining or hating my situation or wishing this wasn’t my life perspective. It is what it is; these are the cards I was dealt. And at the end of the day, I am very privileged; I am lucky enough to be in a better place than a lot of others. I can afford all of these visits to the doctor, the hospitalizations, the surgeries, all these medications and extra tests. I work full-time for a company with an amazing work culture, and have not only an incredible manager and team, but incredible insurance and benefits too. I am beyond grateful for all of that.
That doesn’t mean that I’m not allowed to get frustrated, or feel down about all of this. Believe me, I have my moments, and I do feel at my wits end about the past 4-6 months – I am only human. But I also have always been a realist, I’ve always been someone who is very hyper aware of my situation, aware of my mental status and mental health – so I know how to “check-in” on myself and I know how to make sure I never “spiral.” I’m not perfect, believe me – and I have moments where I lose it and want to scream – but I also know I wouldn’t change this life for a second because of so many other positive things I have.
I’ll keep you posted! Saying hi and checking in on this long over-due update from my “social distancing,” work remote perch, aka my couch!