u/BidForward4918

So some context…my liver is a drama queen. She needs a fainting couch like a corset wearing victorian woman. (I’ve named my liver Beatrice.) Many medicines (even a single Tylenol dose) make my liver enzymes elevate; some (looking at you methotrexate!) elevate them to a dangerous extent. It’s the reason hydroxychloroquine is my only DMARD. Sometimes the disease itself hurts my liver. A little over a year ago, my biologic failed in a spectacularly dramatic way, leading to liver failure and damn near needing a transplant. The silver lining….the liver is very resilient; Beatrice can take a lot of abuse and still regenerate.

This brings me to my current dilemma. I was doing AMAZING on my newest biologic. And then I had an anaphylactic reaction to something in my iron infusion. My immune system still is dysregulated a couple months later, despite rounds of steroids and antihistamine cocktails. Now my ankles and MTP joints are showing significant inflammation. A flare is building. So my doctor and I are gonna go risky to try to save this biologic. By adding a DMARD. I’ve taken my first leflunomide pill. Leflunomide was the least liver-fucking of the previously used DMARDs; it’s the only one my doctor is comfortable trying.

We are approaching very cautiously. I have weekly labs scheduled for the next couple months. I’m still terrified. I have medical PTSD. Last year’s liver drama had me thinking I was going to leave my kids without a mom. So now I have the jumble of big thoughts: I can’t let this awesome biologic fail. Ouch, my feet and ankles. How TF can an allergic reaction lead to so many consequences? I hope this isn’t traumatizing the kids. Am I going to lose my hair again?…..all the noisy thoughts.

Rant over. Buckle up, Beatrice. It’s gonna be a wild ride.

I’ve been on a wild goosechase trying to figure out why my body is losing iron and getting severely anemic. Could be from RA itself or RA related, could be something not RA. After ruling out so many things, the gastro wants to test for gastroparesis, and ordered a gastric emptying study. Guess what? It requires eating radioactive dye infused eggs, and I have an egg allergy. Not all hospitals in my area will do a non egg version of the test. I have to wait a few more weeks and drive a little further for an appointment. They told me I need to bring my own tofu. Crazy. So I’m waiting to eat my (presumably) crappy tofu salad radioactive sandwich. I tell my husband all this and he pipes in “heh. You’re eating a shit sandwich”. Thanks, honey. (I did laugh, though).

At this point, it feels like it’s harder to figure my current diagnosis out than getting my inital RA diagnosis 30 years ago. Why does my RA throw random shit at me every 10 years? Cant I just go back to one of my long remission periods? I’m tired, y’all.