When Symptoms Are Not Mirrored in Lab Tests

Last updated: December 2022

In August 2022, I started having pain in my middle fingers on both hands. Of course, it was worse in my dominant hand. I also could not straighten those fingers without significant pain.

I saw my rheumatologist on September 2nd and reported my symptoms. My latest VECTRA-DA showed that my activity was reduced to the high end of the minimum range. After examination of my hands, we had a long talk.

My medical backstory

A little backstory. My journey with rheumatoid arthritis is probably echoed in yours. Being seronegative, my diagnosis took longer. I tried 4 different medications before I had success with Xeljanz, a JAK inhibitor. When it stopped working after 5 years, we tried the next version of JAK inhibitors, Olumiant.

Unfortunately, I had significant adverse reactions that forced me to stop Olumiant. Did I mention that I am the Queen of adverse reactions? Then we switched to several different categories of DMARDs. I had adverse reactions or no improvement with all of them. Rinvoq, a new JAK inhibitor, had reached the market by this time. I tolerated it and have been on it for several years.

Looking for the right treatment

Back to the rheumatologist. My current rheumatologist is new, as my previous rheumatologist retired. He wondered why we had not tried hydroxychloroquine (Plaquenil). I explained that we had avoided it due to my cardiac history. Based on all my adverse reactions, we decided that, if needed, we would add Plaquenil to the Rinvoq.

Within the next 2 weeks, the third finger of my dominant hand became increasingly worse with swelling and inability to straighten without intractable pain. I messaged my rheumatologist, who agreed it was probably rheumatoid arthritis-related, and he started me on hydroxychloroquine. Interestingly, my CRP was elevated at the visit on September 2nd. My CRP is usually normal, even in a flare.

RA frustrations

Now it’s the end of September, and my fingers have not improved. According to my research, it can take 2 months before I notice any improvement in symptoms and 6 months before the full effect is felt! I can be patient if forced, but this is testing me. It feels like a bad karma variant of Murphy’s law that my dominant hand is worse.

I have an appointment with my nurse practitioner at my rheumatologist's office in December. How long do I wait to know if I have a permanent joint deformity? I am not sure anyone has the answer. For now, I am waiting.

What did I learn from this?

  1. Symptoms frequently do not “show up” in lab tests.
  2. This requires us as patients to fight for treatment of our symptoms without lab “backup.”
  3. Linking your symptoms to your daily activities shows your MD a better picture of your pain. I told my MD that I could no longer use my third finger when opening my car door due to pain. That got his attention.

Hoping this story helps you fight to get what you need!

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

On average, how many times per month do you (or your caretaker) go to the pharmacy?