How to Manage Nerve Damage if You Have ATTR-CM

If you have transthyretin cardiac amyloidosis (ATTR-CM), the same misshapen proteins that affect your heart can also build up around the nerves, leading to nerve damage, or neuropathy. Symptoms are wide-ranging, from tingling toes to dizziness and incontinence.

• Sensory nerves, which help us determine temperature, pain, and touch
• Motor nerves, which control movement
• Autonomic nerves, which control subconscious tasks like breathing and digestion

• Diarrhea and constipation
• Sexual dysfunction
• Problems with urination
• Eye problems, from dry eye and cloudiness to glaucoma

  [5]

• Orthostatic hypotension, a drop in blood pressure when you stand up that can cause dizziness and fainting

  [5]

• Numbness or weakness
• Pain and tingling
• Burning sensation
• Fatigue
• Excessive sweating or lack of sweating

That’s why it’s important for doctors to consider all symptoms and identify the disease early. In extreme cases that are not caught and treated, peripheral neuropathy can make it harder to walk, button a shirt, or use motor skills to perform other essential tasks.

“As someone accumulates amyloid deposits, their disease progresses,” says Elizabeth A. Mauricio, MD, neurologist at Mayo Clinic in Jacksonville, Florida. “Earlier treatment will lead to a better quality of life.”

ATTR-CM medications include “gene silencers” that stop protein production and transthyretin stabilizers. Gene silencers also can treat neurologic symptoms, Dr. Mauricio says.

“Gene-silencing therapies work by reducing the production of problematic transthyretin proteins,” says Rabia Malik, MD, a neurologist with Rush Medical Group in Oak Brook, Illinois, adding that they can help mobility, pain, and digestive-system issues associated with ATTR-CM.

Other gene-silencing medications include:

• patisiran (Onpattro), which can stall progression of nerve-related symptoms and potentially help with mobility issues

  [7]

  [8]

• eplontersen (Wainua), which is prescribed to treat neuropathy in hereditary ATTR-CM

  [9]

Although these medications may stop symptoms from progressing, they are not a cure.

“Nerves can repair themselves, but it’s a low, slow, and often incomplete process,” Mauricio says.

Some medications can provide short-term relief from symptoms of neuropathy, such as relieving pain, itching, and burning. These include:

• Medications typically prescribed to prevent seizures, such as gabapentin (Neurontin) and pregabalin (Lyrica)

  [10]

• Antidepressants, including duloxetine hydrochloride and nortriptyline

  [4]

• Topical treatments, such as lidocaine patches or the topical cream capsaicin

  [4]

• Medicinal cannabis, which may be helpful for some patients, despite little supporting evidence (consult your doctor before trying)

Doctors should avoid recommending opioids to treat peripheral neuropathy because of their dangers and side effects, Mauricio says.

Some people with ATTR-CM and nerve damage may find relief in nonmedicinal options. Many are backed with anecdotal evidence only, however, and may not work for everyone.

• Ergonomic supports to reduce strain, such as splints or shoe inserts
• Relaxation exercises like breath work, meditation, massage, and yoga
• Acupuncture
• Dietary changes to reduce inflammation from food and beverages
• Transcutaneous electronic nerve stimulation (TENS) devices, over-the-counter machines that attempt to block pain with electrical stimulation applied to nerves
• Exercise, with a focus on low-intensity exercise like walking
• Cognitive behavioral therapy
• Hypnosis
• Avoiding alcohol and tobacco
• Getting at least seven hours of sleep each night

  [13]

• Green tea, which could help reduce amyloid deposits

  [14]

• Alpha-lipoic acid supplements, antioxidants that can help with neuropathy associated with diabetes, Dr. Malik says, though there’s no data supporting its use with ATTR-PN

  [15]

In addition to pain, neuropathy can cause numbness, tingling, weakness, and other sensations that make it harder to function every day.

Talk to your care team about safe ways for you to stay mobile inside and outside your home. To avoid complications from a fall, your doctor might suggest using a walking stick, cane, or walker, Malik says.

• Ensuring rooms in your home are properly lit
• Installing grab rails and bars in stairwells and bathing areas
• Removing rugs and other slip risks from floors
• Replacing furniture that has sharp edges or corners
• Purchasing specialized tools to help you get dressed, such as zipper pulls and dressing sticks

• Nerve damage may accompany ATTR-CM, sometimes appearing before the heart disease is diagnosed.
• Symptoms of neuropathy with ATTR-CM, such as numbness and gastrointestinal issues, may resemble those of other conditions, making it important for you to share what you are experiencing to help your healthcare team.
• Although there is no cure for the condition, medications like gene-silencing therapies may stop the progression of neuropathy and improve your quality of life.
• Dietary changes, ergonomic supports, and relaxation techniques may help ease symptoms.