Lupus & Amyloidosis

Real answers. Honest education. Hope for the journey.

💜 What is Amyloidosis?

Amyloidosis is a rare but serious condition that happens when abnormal proteins called amyloid build up in organs or tissues. These protein deposits interfere with how your organs work — especially the kidneys, heart, liver, spleen, and nervous system.

Amyloidosis is not a single disease, but a group of disorders related to protein misfolding. Over time, it can lead to organ failure if not diagnosed and treated early.

➤ Common Symptoms:

Swelling in legs, ankles, or around the eyes
Shortness of breath
Irregular heartbeat
Tingling or numbness in hands and feet
Foamy or reduced urine output
Unexplained weight loss
Fatigue

Update***It’s a lifelong condition with ups and downs. Flares can happen suddenly and without warning. No two people experience Lupus the same way — and many suffer in silence because they "don’t look sick."

🧠 How Amyloidosis Effects Lupus?

In some cases, people with long-term autoimmune diseases like Lupus can develop secondary amyloidosis (also known as AA Amyloidosis).

➤ Here’s how they connect::

Lupus causes chronic inflammation in the body
Over time, chronic inflammation may trigger the liver to make too much of a certain protein (serum amyloid A)
That excess protein can misfold and form amyloid deposits, leading to amyloidosis

In patients with Lupus — especially when the disease has affected the kidneys — this can be a dangerous combination.

🔬 What the Research Says

Recent studies at Northwestern Medicine have shown that changes in the brain — specifically in immune cells called microglia — may happen before major Lupus symptoms appear.

“We’re learning that NPSLE isn’t just a side effect. It may be one of the earliest signs.” — Dr. Carla Cuda, Northwestern Medicine

In people with NPSLE, these brain immune cells show signs of inflammation that correlate with symptoms like anxiety, movement issues, and memory loss. Understanding this could lead to earlier diagnosis, targeted treatments, and less suffering.

✨ Why This Matters

Amyloidosis is often overlooked or misdiagnosed — especially in people already living with chronic illnesses like Lupus. That’s why it’s critical to:

Monitor long-term Lupus activity
Pay attention to new or worsening symptoms
Advocate for deeper testing if things don’t feel right

Jennifer created The Lupus Rainbow because she lived through this confusion, pain, and silence. “It wasn’t just Lupus anymore. I knew something deeper was going on in my body — and I want others to listen to those instincts too.” - Jennifer

Now, she’s on a mission to help others understand what’s happening in their minds and bodies — and to show them they’re not alone.

🧬 Types of Amyloidosis

Amyloidosis isn’t just one condition — it’s a group of disorders caused by different abnormal proteins that build up in the body. Each type affects the body differently depending on where the protein comes from and where it gets deposited.

AL
(Light Chain) Amyloidosis

Cause: Abnormal plasma cells produce excess light chain proteins

Commonly Affects: Heart, kidneys, liver, nerves

Seen In: Blood cancers like multiple myeloma, but not typically linked to Lupus

Treatment: Similar to chemotherapy for blood cancers

AA (Secondary) Amyloidosis

Cause: Chronic inflammation triggers liver to produce too much serum amyloid A (SAA) protein

Commonly Affects: Kidneys, liver, spleen, GI tract

Seen In: Lupus, rheumatoid arthritis, IBD, chronic infections

Treatment: Focus on managing the underlying condition (e.g., Lupus)

✅ This is the form most relevant to Lupus patients.

ATTR (Transthyretin) Amyloidosis

Cause: Abnormal or mutated transthyretin protein made in the liver

Commonly Affects: Heart and nerves

Seen In: Lupus, rheumatoid arthritis, IBD, chronic infections

Treatment: Specialized medications or liver transplant in hereditary cases

Dialysis-Related Amyloidosis

Cause: Build-up of beta-2 microglobulin in people on long-term dialysis

Commonly Affects: Joints and bones

Seen In: Patients with chronic kidney disease on dialysis

Treatment: Kidney transplant or switching dialysis methods

Hereditary Amyloidosis (Familial)

Cause: Inherited gene mutations causing abnormal protein production

Commonly Affects: Varies based on mutation

Seen In: Specific ethnic groups (e.g., African, Portuguese, Swedish)

Treatment: Depends on subtype; may include organ transplant or gene-targeting therapies

Download: Amyloidosis Fact Sheet

“Understanding Amyloidosis: The Hidden Side of Lupus”

Do You Still Have Questions?

Jennifer isn’t a doctor — she’s a real person who lived it.

And now she’s here to teach, support, and stand with you.

info@thelupusrainbow.org