Over the last few months of 2021, I had a TON of medical tests and appointments pending, many slipping over through January this year. Rather than try to cram all of them into one post, I thought I’d discuss the first round of them today, and the next round next week.
Food allergy tests: Every single one came back negative, including peanuts, which I know I’m allergic to. In speaking with my GI doc, she said those tests are really good for ruling things in, but not ruling things out. So if I’ve had allergic reactions to peanuts, I should continue to avoid peanuts. Of course, that means that the coffee allergy test – which also came back negative – doesn’t really tell me much, either. Oh well.
SIBO test: This was a fasting breath test for bacteria overgrowth, which I doubted was my issue, and it also came back negative. So at least that is ruled out.
Fibroscan/MRE of liver: This one is part of a long chain of tests going all the way back to last spring. I mentioned to my primary care doctor that I have swelling and pain under my ribs, and that this goes back to a medication reaction I had all the way back in 2007. We did an ultrasound – which was so painful that I actually went into shock and had to be stabilized afterwards (!!!) – and when that didn’t find anything, we did a ct scan of the abdomen. Still nothing regarding the swollen lumps, which I now suspect is just inflamed portions of my liver, but they noticed some fatty deposits on my liver on the scan. My liver enzymes are all in normal range, so my PCP wanted my GI doctor to do further testing. That led to the fibroscan in the fall, which came back inconclusive, and the special MRI with elastography (MRE) to determine any stiffening of the liver (which would indicate fibrosis/scarring). That came back negative as well. So there are fatty deposits, but they’re minimal, and we just need to keep them from getting worse. (Aka: try to lose weight, reduce inflammation, avoid alcohol, etc)
Celiac blood panel: When I had my colonoscopy/endoscopy in November, they took a biopsy to test for celiac disease (negative). However, my rheumatology panels tested high on the celiac portions. If I hadn’t had the biopsy, our assumption would be that I had celiac disease. As it is, discussion with my rheumatologist and GI doctor concluded that while I may not have celiac disease, bloodwork indicates a gluten sensitivity. This could be solely because of the inflammation caused by RA, or it might be something I’ve developed over time. I have a complicated history with gluten that began in 2013 and is WAY too long for this post. Long story highly condensed: I’ve suspected a sensitivity for many years, and periodically try to cut gluten from my diet, but it makes family meal planning that much harder, so I haven’t been gf since May 2020. Now, my GI doc wants me to go low-gluten to gluten free for the next few months to see if it helps with some of my symptoms.
Enbrel injection: This is only a partial update, since I only had my first injection on Saturday. I’ve had no real results yet, though I’ve noticed a couple small things: a slightly reduced appetite, periods of increased swelling/throbbing of joints (especially in my feet, hands, fingers, and toes), less restful sleep combined with hyper-obsessive dreams, some stabbing jolts of pain in joints during exercise that I’ve never had before. I’ll update this more next week, if there’s more to add.
PS – A note about the Enbrel injection: The particular method they gave me (sure-click, shown in pic) costs over $3k for four weekly doses. Yeah I can’t afford that. Thankfully, I could apply for the Enbrel coupon card, and they paid that $3k balance. Good news, right? Well, the coupon card only covers up to $30k, after which point, benefits are maxed out. So I have less than a year’s worth of medicine that I can take. However, that $3k medication, despite being paid for by Enbrel, counts toward our family deductible, which means that we’ve already met deductible on the 13th of January this year, and now only have to pay 10% for dr visits etc. Great news! On the other hand, we don’t know if prescriptions drop down to the 10% like visits and procedures, so we’ll find out next month if I only have 10 months’ worth of medication, or if I have a tiny bit longer as we stretch out our health insurance as far as we can… Or, to make it more complicated, if it doesn’t drop down to the 10%, I believe after another month or two of the Enbrel payments, we’ll have reached our annual out of pocket max for the year, at which point everything is covered at 100%. Still don’t know if that includes prescriptions, though? This is stupid. Necessary medication should be affordable! (PS. I hate the US’s version of “health care,” if that isn’t obvious…)