Rarely, joint pain may be a symptom of amyloidosis. Amyloidosis-related joint pain may be confused with pain from other conditions that affect the joints, so it is important to let your health care team know as soon as you notice any new or worsened joint symptoms. They will be able to identify the cause of your discomfort and work with you to find the best way of managing it.

Joint Pain in Amyloidosis

Several types of amyloidosis can cause joint pain for a variety of reasons. However, this symptom is rare, especially as an isolated symptom. In most cases, joint pain comes along with the other symptoms of amyloidosis, including:

• Unintentional and significant weight loss
• Severe fatigue, to the point that it interferes with your everyday life and functioning
• Shortness of breath, even during nonstrenuous activities
• Very easy bruising
• Diarrhea
• Constipation
• An irregular heartbeat
• Numbness or tingling in your hands or feet
• Urine changes, like foamy urine or having less urine

Any time you are experiencing joint pain, you should talk to your doctor. Be sure to mention it if you are also experiencing one or more of the above symptoms.

How Amyloidosis Causes Joint Pain

Amyloidosis most often causes joint pain when abnormal amyloid proteins build up in the synovial membranes — the connective tissues that help cushion and lubricate the joints. Amyloid protein buildup in the synovium can cause symptoms such as:

• Joint stiffness
• Swelling in and around the joint
• Joint weakness

The amyloid proteins may also be deposited in the cartilage or tendons around the joints, which can cause similar symptoms. Amyloid proteins can even build up on and in bones themselves. This can cause pain that may be mistaken for a joint-related problem if the buildup is located near a joint. Amyloid proteins can eventually cause problems with the bones, such as fractures (breaks).

Amyloid buildup can occur in joints throughout the body or one or two joints in particular. Amyloidosis in the joints can also cause carpal tunnel syndrome and the “shoulder pad” symptom. The latter occurs when amyloid deposits in the shoulder joints or surrounding soft tissues cause the shoulders to look larger, as if a person is wearing shoulder pads.

Sometimes, joint pain associated with amyloidosis can look like a rheumatic condition such as rheumatoid arthritis, which can lead to misdiagnosis and delays in getting the correct treatment. In fact, some researchers suggest that people with joint symptoms but no clear diagnosis of a rheumatic condition should automatically be screened for amyloidosis. Amyloidosis is a relatively rare disease and can be difficult to diagnose. Delayed diagnosis is common.

What Types of Amyloidosis Cause Joint Pain?

In most cases, joint pain is associated with amyloid light-chain amyloidosis (AL amyloidosis, also known as primary amyloidosis). AL amyloidosis is the most common type of amyloidosis in many countries. Joint pain does not seem to be a common symptom of AA amyloidosis (secondary amyloidosis) nor hereditary amyloidosis (familial amyloidosis).

Joint pain can also occur in dialysis-related amyloidosis. This type of amyloidosis occurs in people who are on long-term kidney dialysis. In particular, this symptom is most common with dialysis-related beta-2-microglobulin amyloidosis. If you have been diagnosed with this kind of amyloidosis, it’s especially important to talk to your doctor about any joint pain you experience.

Managing Joint Pain With Amyloidosis

Let your doctor know as soon as you notice any new or worsened joint symptoms. You and your health care team can work together to determine the best way for you to treat your joint pain from amyloidosis.

Nonsteroidal Anti-Inflammatory Drugs

For managing mild to moderate joint pain in the short term, talk to your doctor about nonsteroidal anti-inflammatory drugs (NSAIDs). These medications help reduce inflammation and pain in the joints.

Generally, NSAIDs will not treat the underlying amyloidosis nor remove deposited proteins from your joints. However, some research indicates that certain NSAIDs may be effective treatments for certain types of amyloidosis. Talk to your doctor to determine whether you should take NSAIDs — and if you should, which ones.

Treating Amyloidosis

Beyond NSAIDs, the best option for treating joint pain associated with amyloidosis may involve treating the condition with one or more of the treatment options below.

Chemotherapy

Chemotherapy medications are most often associated with treating cancer, but they can be used to treat other conditions, including AL amyloidosis. Chemotherapy helps stop the growth of abnormal cells, so these medications will sometimes stop the cells that produce the abnormal amyloid proteins.

Targeted Therapy

Some targeted therapies interfere with the gene that sends the message to produce the abnormal amyloid proteins. Others can stop or stabilize pieces of these proteins in the bloodstream before they join with others and form abnormal proteins.

Stem Cell Transplant

A stem cell transplant for amyloidosis entails having some of your blood taken, from which stem cells are removed. These cells are stored — and sometimes replicated (grown in number) — while you undergo high doses of chemotherapy. After you have completed chemo, the stem cells are reintroduced to your bloodstream. This procedure can help your body stop or slow its production of amyloid proteins.

Surgery and Other Procedures

The procedures you may be eligible for depend on the type of amyloidosis you have and the parts of your body it affects. When amyloidosis affects the joints, a range of surgical procedures may be necessary, including carpal tunnel surgery or a total hip replacement. Your health care provider can talk to you about the pros and cons of these procedures and help you decide how to proceed.

Talk With Others Who Understand

MyAmyloidosisTeam is the social network for people with amyloidosis and their loved ones. Members come together to ask questions, share support and advice, and meet others who understand life with amyloidosis.

Have you experienced joint pain with amyloidosis? Share your experience in the comments below or by posting on MyAmyloidosisTeam.