Simple FactSheet: peripheral neuropathy

Peripheral Neuropathy
a Simple FactSheet from the AIDS Treatment Data Network

||||| Peripheral neuropathy is:

A condition caused by damage to the nerves in the peripheral nervous system. The peripheral nervous system includes nerves that run from the brain and spinal cord to the rest of the body. Many of these nerves are involved with sensation and feeling things such as pain, temperature and touch. Up to one-third of people with HIV may get some symptoms of peripheral neuropathy. Peripheral neuropathy is usually felt at first as tingling and numbness in the hands and feet. Symptoms can be described as burning, shooting pain, throbbing, aching, and "feels like frostbite" or "walking on a bed of coals."
Peripheral neuropathy can sometimes be caused by HIV but is most commonly a side effect of drugs. Sometimes neuropathy can be caused by vitamin deficiencies or diabetes. Diagnosis of peripheral neuropathy is done by a physical exam. Tests of vitamin B12 levels, thyroid function and glucose levels are also used to check for vitamin deficiencies or diabetes. If peripheral neuropathy is caused by a drug, the symptoms usually get better once the drug is stopped, although it can take 6-8 weeks and the pain can actually get worse for a while.

Some other conditions can have the same symptoms and be confused with peripheral neuropathy. A symptom of CMV myelitis is a general weakening of the legs and is treated with anti-CMV drugs. Vacular myelopathy can cause numbness in the limbs and weakening of the spinal cord. New treatments are being studied for myelopathy. Herpes infections that cause symptoms of peripheral neuropathy are treated with acyclovir.

||||| Drugs that can cause peripheral neuropathy:

Some drugs that people with HIV take can cause peripheral neuropathy. Not everyone taking these drugs will get peripheral neuropathy, but it's something to watch out for. The risk of getting peripheral neuropathy can sometimes increase when the drugs listed here are taken together. The anti-HIV drugs didanosine (ddI , Videx), zalcitabine (ddC, Hivid), and stavudine (d4T, Zerit) are the most common causes of drug-related neuropathy. Other potential causes are isoniazid (INH), ethambutol (Myambutol), vincristine, metrodinazole (Flagyl), dapsone. Drinking alcohol increases the risk of neuropathy. Taking too much vitamin B6 can also cause neuropathy. There have also been reports of neuropathy associated with the protease inhibitor indinavir (Crixivan).

||||| Treatments:

Although there is no proven treatment available for HIV-related neuropathy, there are several options available for managing the symptoms.
gabapentin (Neurontin), an anti-seizure medication, has been studied and proven effective in diabetic neuropathy, which is thought to be similar to HIV-related neuropathy. For night -time pain relief, Neurontin can be combined with topical pain relievers such as Lidocaine ointment and the Lidoderm patch. Capsaicin, available over the counter as Capzasin-P and Capzasin-HP, is another option for topical pain relief.
Other anti-seizure medications such as carbamazepine (Tegretol) and phenytoin (Dilantin) are useful for treating symptoms of neuropathy, but they can lower the amount of HIV-fighting medication in the body. Lamotrigine (Lamictal), another anti-seizure medication, works differently from carbamazepine and phenytoin to reduce symptoms.

||||| Relieving the pain:

While doctors can be reluctant to prescribe pain killers, many studies have shown that people don't take too many or get addicted when they need them for pain relief. Amitriptyline (Elavil), an antidepressant, can work if given at a high enough dose (most people will get pain relief with a 100 mg. dose), but can cause side effects if given at higher doses. For severe pain, strong pain killers such as methadone or morphine may be necessary. Fentanyl patches, which you wear on your arm like a nicotine patch, release a steady amount of drug and can help with symptoms of peripheral neuropathy. People who are in pain can get relief from these drugs without losing their ability to function. You can contact the Mount Sinai Neuro-AIDS Research Program at (212) 241-0784. Their web site is www.mssm.edu/neurology/neuroaids/index.shtml

||||| Nutrients and peripheral neuropathy:

While nutrients and vitamin supplements haven't been studied the way other drugs have been as treatments for peripheral neuropathy, there are some things you can do yourself that may help with symptoms. Many of the B vitamins have been found to help with symptoms of peripheral neuropathy, although high levels of B6 may worsen symptoms. The ones that are helpful are B1, B12 and folate. Try taking a multivitamin with vitamin E in it, and a B complex to help with symptoms of peripheral neuropathy. Make sure the B complex, sometimes called a vitamin B stress complex, has folate in it. Vitamin B12 can also be given by shots into a muscle every couple of weeks, and this probably gets more vitamin B12 into the body than vitamin pills. Drinking alcohol can block how your body uses folate and vitamin B12.

Other supplements that have shown some effect on neuropathy include magnesium, alpha-lipoic acid (also known as thioctic acid) and gamma linolenic acid (GLA). One study used a diet high in a nutrient called inositol, which is found in cantaloupe, peanuts, grapefruit and whole grains. These nutrients have been studied in diabetic neuropathy, which is thought to be similar to HIV-related neuropathy.

||||| On-going studies:

A study of a topical cream called Lidoderm at Mount Sinai Medical Center in New York reported promising results, but a larger study needs to confirm the findings. A treatment called nerve growth factor (NGF) was also being studied for the treatment of peripheral neuropathy, but these studies have now been stopped. Although some people have reported very good results with NGF, the company that makes it (Genentech) has decided to stop any further development of the drug. A new promising drug memantine is still in clinical trials. It has shown significant possibilities for pain reduction, particularly for nocturnal pain. Memantine (Axura) has been approved for the treatment of Alzheimer's in Europe, and has filed for approval with the U.S. Food and Drug Administration. A pilot study of the safety, toxicity, and tolerability of Acetyl-L-Carnitine in the treatment of peripheral neuropathy is scheduled to open in the Fall of 2002.

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\|\|\|\|\| Peripheral neuropathy is:
A condition caused by damage to the nerves in the peripheral nervous system. The peripheral nervous system includes nerves that run from the brain and spinal cord to the rest of the body. Many of these nerves are involved with sensation and feeling things such as pain, temperature and touch. Up to one-third of people with HIV may get some symptoms of peripheral neuropathy. Peripheral neuropathy is usually felt at first as tingling and numbness in the hands and feet. Symptoms can be described as burning, shooting pain, throbbing, aching, and "feels like frostbite" or "walking on a bed of coals." Peripheral neuropathy can sometimes be caused by HIV but is most commonly a side effect of drugs. Sometimes neuropathy can be caused by vitamin deficiencies or diabetes. Diagnosis of peripheral neuropathy is done by a physical exam. Tests of vitamin B12 levels, thyroid function and glucose levels are also used to check for vitamin deficiencies or diabetes. If peripheral neuropathy is caused by a drug, the symptoms usually get better once the drug is stopped, although it can take 6-8 weeks and the pain can actually get worse for a while. Some other conditions can have the same symptoms and be confused with peripheral neuropathy. A symptom of CMV myelitis is a general weakening of the legs and is treated with anti-CMV drugs. Vacular myelopathy can cause numbness in the limbs and weakening of the spinal cord. New treatments are being studied for myelopathy. Herpes infections that cause symptoms of peripheral neuropathy are treated with acyclovir.
\|\|\|\|\| Drugs that can cause peripheral neuropathy:
Some drugs that people with HIV take can cause peripheral neuropathy. Not everyone taking these drugs will get peripheral neuropathy, but it's something to watch out for. The risk of getting peripheral neuropathy can sometimes increase when the drugs listed here are taken together. The anti-HIV drugs didanosine (ddI , Videx), zalcitabine (ddC, Hivid), and stavudine (d4T, Zerit) are the most common causes of drug-related neuropathy. Other potential causes are isoniazid (INH), ethambutol (Myambutol), vincristine, metrodinazole (Flagyl), dapsone. Drinking alcohol increases the risk of neuropathy. Taking too much vitamin B6 can also cause neuropathy. There have also been reports of neuropathy associated with the protease inhibitor indinavir (Crixivan).
\|\|\|\|\| Treatments:
Although there is no proven treatment available for HIV-related neuropathy, there are several options available for managing the symptoms. gabapentin (Neurontin), an anti-seizure medication, has been studied and proven effective in diabetic neuropathy, which is thought to be similar to HIV-related neuropathy. For night -time pain relief, Neurontin can be combined with topical pain relievers such as Lidocaine ointment and the Lidoderm patch. Capsaicin, available over the counter as Capzasin-P and Capzasin-HP, is another option for topical pain relief. Other anti-seizure medications such as carbamazepine (Tegretol) and phenytoin (Dilantin) are useful for treating symptoms of neuropathy, but they can lower the amount of HIV-fighting medication in the body. Lamotrigine (Lamictal), another anti-seizure medication, works differently from carbamazepine and phenytoin to reduce symptoms.
\|\|\|\|\| Relieving the pain:
While doctors can be reluctant to prescribe pain killers, many studies have shown that people don't take too many or get addicted when they need them for pain relief. Amitriptyline (Elavil), an antidepressant, can work if given at a high enough dose (most people will get pain relief with a 100 mg. dose), but can cause side effects if given at higher doses. For severe pain, strong pain killers such as methadone or morphine may be necessary. Fentanyl patches, which you wear on your arm like a nicotine patch, release a steady amount of drug and can help with symptoms of peripheral neuropathy. People who are in pain can get relief from these drugs without losing their ability to function. You can contact the Mount Sinai Neuro-AIDS Research Program at (212) 241-0784. Their web site is www.mssm.edu/neurology/neuroaids/index.shtml
\|\|\|\|\| Nutrients and peripheral neuropathy:
While nutrients and vitamin supplements haven't been studied the way other drugs have been as treatments for peripheral neuropathy, there are some things you can do yourself that may help with symptoms. Many of the B vitamins have been found to help with symptoms of peripheral neuropathy, although high levels of B6 may worsen symptoms. The ones that are helpful are B1, B12 and folate. Try taking a multivitamin with vitamin E in it, and a B complex to help with symptoms of peripheral neuropathy. Make sure the B complex, sometimes called a vitamin B stress complex, has folate in it. Vitamin B12 can also be given by shots into a muscle every couple of weeks, and this probably gets more vitamin B12 into the body than vitamin pills. Drinking alcohol can block how your body uses folate and vitamin B12. Other supplements that have shown some effect on neuropathy include magnesium, alpha-lipoic acid (also known as thioctic acid) and gamma linolenic acid (GLA). One study used a diet high in a nutrient called inositol, which is found in cantaloupe, peanuts, grapefruit and whole grains. These nutrients have been studied in diabetic neuropathy, which is thought to be similar to HIV-related neuropathy.
\|\|\|\|\| On-going studies:
A study of a topical cream called Lidoderm at Mount Sinai Medical Center in New York reported promising results, but a larger study needs to confirm the findings. A treatment called nerve growth factor (NGF) was also being studied for the treatment of peripheral neuropathy, but these studies have now been stopped. Although some people have reported very good results with NGF, the company that makes it (Genentech) has decided to stop any further development of the drug. A new promising drug memantine is still in clinical trials. It has shown significant possibilities for pain reduction, particularly for nocturnal pain. Memantine (Axura) has been approved for the treatment of Alzheimer's in Europe, and has filed for approval with the U.S. Food and Drug Administration. A pilot study of the safety, toxicity, and tolerability of Acetyl-L-Carnitine in the treatment of peripheral neuropathy is scheduled to open in the Fall of 2002.