Amyloidosis

What is Amyloidosis?

Amyloidosis is a group of acquired and hereditary diseases in which misfolded protein fibrils are deposited between cells and disrupt how organs work.^[1] It can be localized to one tissue or systemic, affecting several organs.^[1] Amyloidosis is a serious medical condition that needs diagnosis and treatment by specialists.

Common symptoms

Symptoms depend on which organs are involved, and they often look like more common problems, so diagnosis is frequently delayed.^{[1, 2]}

• Protein in the urine and swelling from kidney involvement
• Heart failure symptoms such as shortness of breath and swollen legs, or abnormal heart rhythms^[3]
• Numbness, tingling or pain in the hands and feet, and dizziness or other autonomic problems^[1]
• An enlarged liver or tongue and bruising around the eyes^[1]
• Fatigue, weight loss and digestive upset

Causes and risk factors

The main systemic types are named for the protein involved. In AL amyloidosis, a small clone of abnormal plasma cells makes light chains that form amyloid.^{[4, 5]} In AA amyloidosis, long-lasting inflammation from another disease leads to deposits.^[6]

In ATTR amyloidosis, the liver-made protein transthyretin misfolds. This can happen with a normal gene, mostly in older adults, or because of an inherited variant.^{[3, 7]}

How it is diagnosed and treated conventionally

Diagnosis requires a tissue biopsy showing amyloid, along with tests to identify the protein type, because treatment differs for each type.^{[2, 4]} For ATTR heart disease, blood tests to exclude AL amyloidosis combined with a nuclear heart scan can confirm the diagnosis.^[3]

AL amyloidosis is treated with bortezomib- or daratumumab-based drug combinations and, in selected patients, a stem cell transplant.^[4] Tafamidis is approved for ATTR cardiomyopathy and has been shown to reduce deaths and hospital stays.^{[3, 8]} AA amyloidosis is managed by controlling the underlying inflammation.^[6] Prognosis varies widely by type, and early diagnosis matters because treatment cannot reverse severe organ damage.^[2]

Why Amyloidosis calls for a whole-person approach

Amyloidosis affects the whole body, so symptoms often come from several organs at once. A person may deal with fatigue, nerve symptoms, fluid retention, digestive trouble and the demands of treatment together.^[1] This is why care is usually coordinated by a team.

Complementary care cannot change the amyloid deposits or the underlying disease. Its role is limited to helping people cope with symptoms and treatment side effects, with the treating team aware of it.

Nerve symptoms

Peripheral neuropathy, with numbness, tingling and pain, is a feature of hereditary ATTR amyloidosis and can occur in other types.^{[2, 7]} Some AL amyloidosis treatments, such as bortezomib, can also affect nerves.^[4]

Heart and fluid balance

The heart is among the most commonly affected organs, and the main symptomatic treatment for ATTR heart failure is diuretics to control fluid overload.^[3] Anything used alongside this care must be checked by the cardiology team.

Fatigue and sleep

Fatigue is a common complaint with systemic amyloidosis and with cancer-directed treatment.^{[1, 9]} Sleep problems and fatigue are also symptoms where acupuncture has been studied in cancer patients, as described below.

Kidney and liver involvement

Kidney and liver involvement affects which herbs and medicines are safe.^{[1, 10]} This is a major reason herbal products need an individual review.

Acupuncture as supportive care in Amyloidosis

What the research shows

No clinical trials of acupuncture for amyloidosis itself were found in a PubMed search. The evidence below is for symptoms in other conditions and may not carry over.

In cancer care, an overview of 51 systematic reviews found that acupuncture appeared helpful for cancer-related pain, fatigue, insomnia, nausea and vomiting, but most of the reviews were of very low methodological quality.^[9] A meta-analysis of 10 randomized trials found acupuncture reduced cancer-related fatigue compared with sham acupuncture or usual care.^[11] For cancer-related insomnia, a meta-analysis reported better sleep scores than a wait-list control in breast cancer patients, but real and sham acupuncture did not differ significantly, and the studies varied widely.^[12] A 2024 network meta-analysis of 33 studies in chemotherapy-induced peripheral neuropathy found improvements in symptoms, pain and quality of life with acupuncture-related treatments, although the overview above rated the evidence for neuropathy as inconsistent.^{[9, 13]} The cause of nerve damage differs in amyloidosis, so these results cannot be assumed to apply.

For heart failure, a systematic review of seven trials found that acupuncture was inconclusive, with considerable methodological flaws in most trials.^[14]

How acupuncture may work

Researchers propose that acupuncture influences pain signaling, stress responses and inflammation. These are proposed explanations, and none has been tested in amyloidosis.

What treatment involves

Treatment uses fine, sterile, single-use needles placed at selected points, usually left in for about 20 to 40 minutes. A course usually involves several visits, with reassessment along the way. Placement is adjusted around swollen, fragile or numb areas of skin.

Serious problems from acupuncture are rare. In prospective studies, about 9 in 100 patients had a minor reaction such as bleeding, soreness or redness at a needle site, and serious events occurred in about 1 in 10,000 patients.^[15] Tell the practitioner first if you bruise easily, have a bleeding disorder, take blood thinners, have low platelets, are pregnant, or have a pacemaker or heart rhythm device (relevant to electroacupuncture).

Ayurvedic medicine as supportive care in Amyloidosis

The Ayurvedic view

Ayurveda has no classical disease that matches amyloidosis. Practitioners would look at the person's symptoms and constitution, such as weakness, swelling or nerve pain, and describe them in terms of the doshas and the tissues (dhatus). These are traditional categories for choosing supportive care, not biomedical diagnoses.

Therapies that may be used

Care is chosen for the individual and, with your medical team's knowledge, may include:

• Regular meals and sleep hours, adapted to any diet advised by your cardiology or kidney team (for example fluid limits and diuretics for heart failure)^[3]
• Gentle warm oil massage over areas that are not swollen or fragile
• Stress-reducing practices such as breathing exercises and gentle movement

Panchakarma, including medicated purgation and enema therapies, is not appropriate with amyloidosis. People with organ involvement, frailty, active treatment or fluid and electrolyte problems should not undergo these procedures.

What the research shows

We found no clinical trials, and no systematic reviews of Ayurvedic treatment in amyloidosis. Any benefit for the disease or its symptoms is unknown. We cannot cite evidence that Ayurvedic medicine helps people with amyloidosis. Product quality is also a concern, because about one fifth of Ayurvedic medicines bought online contained detectable lead, mercury or arsenic.^[16]

Herbal medicine as supportive care in Amyloidosis

Herbs and formulas that have been studied

There are no clinical trials of Chinese or Ayurvedic herbal formulas in amyloidosis. Two plant substances have been looked at in the disease itself: curcumin from turmeric and epigallocatechin-3-gallate (EGCG) from green tea. Both are discussed because patients often ask about them.

What the research shows

The evidence is very limited. One case report describes a patient with laryngeal AL amyloidosis and smoldering myeloma who took curcumin and showed no disease progression over five years, but a single case cannot show that curcumin caused this.^[17] For ATTR cardiac amyloidosis, a systematic review found only small non-comparative studies of green tea extract (EGCG), and the review supports tafamidis as the evidence-based drug therapy.^[8]

Safety and herb-drug interactions

Herbs are active substances and can interact with medicines. Reported interactions include bleeding when warfarin is combined with herbs such as dan shen, dang gui, ginseng, ginger, garlic and Boswellia, and lowered cyclosporine blood levels with St. John's wort.^{[18, 19]} People with amyloidosis often take anticoagulants, diuretics, heart rhythm drugs, chemotherapy or immune-modifying drugs, so every herb needs a review by your physician and pharmacist.

Herbal and dietary supplements can cause liver injury, and green tea extract has been among the products implicated.^[10] Herbs can also burden damaged kidneys or liver. In one study, about one fifth of Ayurvedic products bought online contained detectable lead, mercury or arsenic.^[16] Do not start any herb or supplement without telling your treating team. Tell us if you are pregnant or breastfeeding.

Translating traditional medicine into modern biological language

The links drawn here are interpretation, not equivalence. Traditional Chinese medicine may describe fatigue, swelling and numbness in terms of deficiency of qi, fluid retention or blocked channels, and Ayurveda describes them in terms of the doshas. Modern researchers instead describe these symptoms through organ damage from amyloid deposits, nerve injury and treatment side effects.^{[1, 7]}

The ideas from traditional care that researchers study most are practical ones: pain modulation, stress reduction and sleep. No study has shown that a traditional pattern corresponds to a type of amyloid, and no traditional therapy has been shown to change amyloid deposits.

How this care fits with your medical care

Complementary care is a supportive addition, never a replacement. Keep your hematologist, cardiologist, nephrologist or neurologist, and do not stop or change any prescribed treatment without your prescriber. We do not diagnose or manage amyloidosis. For a condition like this, we ask that you are under a physician's care for it and that your treating team knows you are receiving complementary care.

Please bring your diagnosis and amyloid type, a full list of medicines and supplements, recent blood, kidney and heart test results, and the names of your specialists.

When to seek urgent medical care

Amyloidosis can cause sudden serious complications, especially in the heart, so new or worsening symptoms need prompt attention.^{[2, 3]}

• Shortness of breath, especially when lying flat, or rapidly increasing leg swelling
• Chest pain, fainting or a racing, irregular or very slow heartbeat
• Little or no urine, or sudden swelling of the face or body
• New weakness, loss of balance or sudden worsening numbness
• Black or bloody stools, vomiting blood, or bleeding that does not stop

If you have any of these symptoms, call 911 or go to the nearest emergency department.