Elaine Wiley

This story was told to CreakyJoints by Elaine Wiley, a 46-year-old legal secretary based in Los Angeles who took a precision medicine test that analyzes blood to show your probability of responding to TNFi therapies. Here’s more about Elaine’s experience and recommendations for others considering precision medicine.

The symptoms started in my hands when I was about 30 years old. I began to have problems opening water bottles, typing for work, or even washing my hair. I thought it was really bad carpal tunnel syndrome, but then my feet and neck started to be affected, too.   

Things spiraled from there. I could barely walk and hold my silverware. I couldn’t cut my food or brush my teeth. My primary care doctor recommended running blood tests, where rheumatoid factor and CRP (markers of an underlying autoimmune condition) turned up.  

He referred me to a rheumatologist and I started taking methotrexate. I did so for about three months but didn’t see any positive response, so I started my first TNF inhibitor but developed an allergic reaction to the infusion. 

I was really disappointed that I had to stop, because I was seeing great relief with that TNF inhibitor. At that point, my rheumatologist told me there was nothing else he could do for me.  

My husband was in grad school at the time and it was important that I continued to work. I sought out the second opinion of another rheumatologist at a teaching hospital. His personality is quite different from that first rheumatologist — he is very hopeful.  

He explained to me that there were other drugs on the market we could try and that just because I couldn’t take one medication, it didn’t mean my journey was over. Things didn’t need to look grim. He is now my current rheumatologist.  

Why I Took the PrismRA Test

I have refractory rheumatoid arthritis (meaning it’s difficult to treat) — and I have gone through every drug class on the market for it. My new rheumatologist recommended a new precision medicine test called PrismRA to me because we thought it may provide beneficial information. But we also knew that not all tests and medicines work for everyone alike.  

Along with teaching fellows and students, my rheumatologist teaches his patients as well, which is great. He is very forthcoming about anything new hitting the market, even drug classes.  

I’m also always willing to try anything new that hits the market, because I think the information gained from things like that is helpful.  

As a bit of background, I have overlap autoimmune disease: In addition to rheumatoid arthritis, I also have systemic sclerosis (scleroderma) and had drug-induced lupus. It always seems like we can get the rheumatoid arthritis in check, but then the scleroderma goes out of check. We’ve had a hard time finding medication that works for both things, or at least works really well for one.  

I told my rheumatologist that I always felt the best when I was on TNF inhibitors, so he recommended the PrismRA test to see how my body responds to them. I used their kit and mobile phlebotomist. The kit I received had a form filled out by my physician, three empty vials for the phlebotomist, and the mailing slip to ship it all back. My rheumatologist shared with me what was going to happen and what the results would mean. I was probably one of the first patients at our rheumatology clinic to have PrismRA performed.    

What the Results Mean to Me

I was really impressed by how quickly the results came back — within just a week.  

My results said that I respond to TNF inhibitors, which makes sense because I always felt the best on them. Since my test, I’ve continued on my current B-cell therapy because it treats both of my autoimmune diseases. However, I think it’s extremely beneficial to know that if we’re able to work with the side effects, maybe we could go back to the TNF inhibitors. 

In fact, I really wish that this information would have been available at the beginning of my treatment journey. Who knows how different it would have looked if I had this test available to me 15 to 16 years ago.  

When my first TNF inhibitor failed me because of an allergic reaction, it would have been beneficial to say: “This medication class works, but maybe we can try something different and work with the side effects in the future.” 

As a patient, it’s so comforting to know that your autoimmune disease might stay in check with a given drug class. You could live a potentially normal life, or as close to it as it looks, knowing that would work for you.  

My Advice for Other Patients: Explore Your Options

Often, I think that patients are scared to jump into things that are new because they’re afraid their insurance company won’t pay for it or they won’t have the money to pay for it themselves. They don’t realize that many companies offer financial aid to patients, often for novel tests as well. If you reach out, those companies may be willing to work with the patient to gain this information and do these tests at an affordable cost.  

[Note: In many ways, this is what co-pay assistance programs do as well. As a first step, it may help to call and ask about any assistance you may be eligible for if you find a specific test or medication is too expensive. It is also helpful to speak to your care provider to understand options.]  

Don’t be scared to approach your physician or your rheumatologist about asking for these tests. I have more often encountered a physician who is open to my questions about things I’ve researched than one who is put off about it.  

A lot of times as patients, we’re scared to approach our physicians because maybe they’ll think we’re hypochondriacs or that we’re listening to somebody who doesn’t have a medical degree. But more often than not, rheumatologists are impressed that we’re learning about how we can do things to benefit the care that they’re providing. We are all in this together, so it never hurts to ask.  

This article is part of “Your Guide to Precision and Personalized Medicine for Rheumatoid Arthritis” and was made possible with support from Scipher Medicine. 

Listen: Shilpa’s Rheumatoid Arthritis Journey

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