Dealing with Drug-Induced Lupus from Humira: What's the Next Step?

Navigating life with Crohn's disease is not easy, but discovering that my treatment with Humira led to drug-induced lupus felt incredibly overwhelming. As I adapt to this new reality, I want to share my experience, focusing on lupus symptoms, important lab tests, and the necessity of consulting a specialist. This journey is full of uncertainties, but by sharing my story, I hope to help others facing similar situations.

Understanding Drug-Induced Lupus

Drug-induced lupus erythematosus (DILE) is a rare but serious autoimmune condition triggered by certain medications, including Humira. While DILE shares symptoms with systemic lupus erythematosus (SLE), a key difference is that DILE typically resolves once the offending medication is discontinued. It’s estimated that about 10% of lupus cases are drug-induced.

My diagnosis shocked me. Humira saved my life a few years ago, and it put me into deep remission. Humira made me feel "normal" ........until it didn't. It was clear to me that something other than my Crohn's disease was going on. The reality that medications can sometimes lead to new health issues is difficult to accept but important to recognize.

Recognizing the Symptoms of Lupus

If you take immunosuppressive drugs like Humira, it is crucial to recognize lupus symptoms. Here are some common signs to watch for:

• Fatigue: Persistent tiredness that doesn't improve with rest, often described as a heavy fog.

• Joint Pain: Unexplained pain or swelling, particularly in fingers, wrists, or knees, which can interfere with daily activities.

• Skin Rash: A butterfly-shaped rash over the cheeks and nose is characteristic of lupus. Approximately 40% of lupus patients experience this.

• Photosensitivity: Sensitivity to sunlight, which may cause rashes or exacerbate existing symptoms.

• Fever: Persistent low-grade fevers without a clear cause, often around 99°F to 101°F.

• Hair Loss: Thinning hair or patches of hair loss, which can be distressing.

• Mouth or Nose Ulcers: Sores that can develop in the mouth or on the lips, affecting the ability to eat and communicate.

  
  

The symptoms I have been having include sever fatigue, joint pain, hair loss and a distinct rash on my face. The rash was probably the biggest red flag for me. Several times per day, my face would swell, turn red and be very hot to the touch. I'm 45, so at first I thought it might be perimenopause, or the cream I use on my face at night. It happened so frequently though, that I knew it warranted further investigation. Then came the debilitating joint pain in my wrists and elbows. I am a runner, and it takes A LOT to prevent me from doing my favorite thing, but I haven't gone running in two months because my body aches so bad. It's like I'm in someone else's body.

If you experience any of these symptoms while on medications like Humira, reach out to your doctor RIGHT away. Early detection is your best chance at reversing symptoms.

Essential Laboratory Tests

When lupus is suspected, the following tests are used to help confirm a diagnosis:

• Antinuclear Antibody (ANA) Test: A blood test that checks for antibodies common in autoimmune disorders. About 95% of people with lupus will have a positive ANA test.

• Anti-double Stranded DNA (anti-dsDNA) Test: This specific test offers additional confirmation; 70% of lupus patients will have positive results.

• Erythrocyte Sedimentation Rate (ESR) or C-reactive Protein (CRP): Tests that measure inflammation levels in the body. Elevated levels can signal an immune response.

• Complete Blood Count (CBC): This test checks for anemia, low white blood cell counts, or low platelets—conditions prevalent in lupus patients.

  
  

In my case, I had a positive ANA test along with very low C3 and C4 levels. Very low C3 and C4 levels in a blood test typically indicate an active autoimmune disease, most commonly lupus, where the immune system is attacking the body's own tissues. I should also mention it's important to rule out other autoimmune diseases before making a lupus diagnosis. I tested negative for rheumatoid arthritis, Wilson's disease and Sjogren's syndrome, so this helped us get closer to an answer. These abnormal lab results along with all of my symptoms was enough for a referral to rheumatology.

The Importance of Seeing a Rheumatologist

If there’s any indication of lupus, seeing a rheumatologist is vital. These specialists can confirm the diagnosis and help devise an appropriate treatment plan. If I am being completely honest, I didn't care for my rheumatologist. I prefer a very thorough doctor who is going to have a conversation with me, and answer any questions I have. The doctor I had spent very little time with me, but had the answers he needed to make the official call on drug induced lupus.

I do want to emphasize that not everyone has a PCP that will make a referral. As a patient, it's your right to request a referral. Not all doctors are as aggressive as some. My PCP was just going to wait and watch my symptoms, and do repeat labs in a few months. That wasn't good enough for me. I demanded a referral. Time is of the essence, especially if you need to reverse symptoms, and get on a new medication ASAP.

Transitioning from Humira to Entyvio

The next step in my treatment plan is stopping Humira right away. This abrupt change is daunting as I worry about how quickly the drug will exit my system and whether my Crohn's symptoms will return.

To replace Humira, my GI doctor prescribed Entyvio infusions. Unfortunately, I am currently waiting for prior authorization from my insurance. This delay brings additional stress, reminding me that transitions can be daunting.

I encourage anyone in similar situations to maintain open communication with their healthcare providers. Discussing worries or fears about switching medications is crucial for easing anxiety.

Moving Forward with Hope

The journey through drug-induced lupus caused by Humira has been an emotional ride. Filled with trepidation and hope, I am focusing on each step, whether identifying symptoms, communicating with my healthcare team, or preparing for new treatments.

I want to stress the importance of being proactive. Being informed about potential medication side effects, understanding lupus symptoms, and knowing when to seek specialized care can empower individuals facing similar battles.

While the road ahead may be challenging, I believe that with the right support, I will manage both Crohn's disease and the complications from lupus. By sharing our stories, we can grow stronger together in our journeys.