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Joint pain can have many causes, but when you’re living with amyloidosis, there may be another possibility to consider. Rarely, amyloid proteins can build up in or around the joints and cause pain, swelling, or stiffness.
This is called amyloid arthropathy, a type of joint disease caused by amyloid deposits. Because it can look like arthritis (inflammation of a joint) or another joint condition, it’s important to tell your healthcare team about any new or worsening joint pain. Here’s what to know about the symptoms, causes, and treatment.
Several types of amyloidosis can cause joint pain, but this symptom is rare, especially when it happens by itself. More often, amyloidosis symptoms depend on which organs or tissues are affected and may include:
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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.
Amyloid arthropathy can happen when amyloid deposits build up in soft tissues, bones, or areas around joints. In amyloid light-chain (AL) amyloidosis, rare soft-tissue and skeletal deposits can include periarticular deposits that lead to arthropathy. “Periarticular” means around a joint.
Amyloidosis may also affect the synovium, the thin lining inside a joint. The synovial membrane makes fluid that helps lubricate the joint. Cartilage serves a different purpose: It covers the surface of bones at a joint and helps reduce friction.
Amyloid buildup in or near joints can cause symptoms that may feel like arthritis:
Amyloid deposits can also contribute to carpal tunnel syndrome and, rarely, a “shoulder pad” sign when deposits make the shoulders look enlarged. AL amyloidosis can involve soft tissue.
Amyloid arthropathy may affect several joints, though sometimes only one or a few are involved. Because the pain, swelling, and stiffness can look like other types of arthritis, it may take time to identify amyloidosis as the cause.
Amyloid arthropathy and rheumatoid arthritis can both cause joint pain, swelling, and stiffness. In rheumatoid arthritis, the immune system mistakenly attacks healthy cells in the joints. Amyloid arthropathy, by contrast, is related to amyloid deposits in or near joints.
Because symptoms can overlap, tell your doctor about signs that may point beyond rheumatoid arthritis, such as easy bruising, numbness or tingling in the hands or feet, unexplained weight loss, shortness of breath, foamy urine, digestive changes, or carpal tunnel symptoms.
Treatment for joint pain depends on what’s causing it and how severe it is. Options may include medicines, treatment for the underlying amyloidosis, or procedures.
For mild to moderate joint pain in the short term, your doctor may discuss nonsteroidal anti-inflammatory drugs (NSAIDs) or corticosteroid treatment. In amyloid arthropathy, NSAIDs or low-dose corticosteroids may provide symptom improvement, but they don’t remove amyloid deposits or treat the underlying amyloidosis. Corticosteroid injections can be used when one joint is affected.
NSAIDs may not be safe for everyone with amyloidosis. They should be used only with individualized medical guidance, especially if you have kidney disease, gastrointestinal disease, fluid retention, or amyloid-related bleeding problems.
Corticosteroid treatment may help with joint pain and may also be used as part of combination treatment for AL amyloidosis. Corticosteroids should be used with caution and only as recommended by your healthcare provider.
Treating the underlying amyloidosis may help joint symptoms when the joint pain is driven by amyloid deposits. Treatment depends on the amyloidosis subtype and the organs involved, so accurate amyloid typing is important.
For AL amyloidosis, treatment is usually directed at abnormal plasma cells that make the light chains that form amyloid. Cancer medicines may be used for AL amyloidosis, and many people now start therapy containing daratumumab (Darzalex). Daratumumab is an anti-CD38 monoclonal antibody, a targeted medicine that attaches to a protein on certain cells.
Transthyretin amyloidosis, or ATTR amyloidosis, happens when a protein called transthyretin builds up as amyloid. Treatments may help stabilize this protein so it is less likely to form amyloid or reduce how much transthyretin the body makes. These treatments are different from those used for AL amyloidosis.
Autologous blood stem cell transplant uses a person’s own stem cells and may be an option for selected people with AL amyloidosis. Doctors first collect and store the stem cells before giving high-dose chemotherapy, then return the cells to the bloodstream through a vein. This treatment is generally considered when AL amyloidosis is not advanced and the heart is not severely affected.
Procedures depend on the type of amyloidosis and the parts of the body affected. When amyloidosis affects joints or nearby tissues, some people may need procedures such as carpal tunnel release or joint replacement. Your healthcare provider can explain the pros and cons based on your symptoms, amyloidosis type, and overall health.
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I just started Vyndamax I have cardiac ATTR. Just wondering if anybody has good bad or indifferent experiences with the drug.
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I suffer also from Stiff Body Syndrome. My nocturnal muscle spasms and lower leg pains are very real!
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