Neuropathy means nerve damage. It's a common complication of HIV infection, especially as you get older.
Medical advancements have transformed HIV into a manageable lifetime condition. But as more and more people with the virus live normal lives into old age, doctors have found that HIV might raise your chances for neuropathy. In fact, about a third of people with HIV will have some sort of neuropathy in their lifetime.
There are a number of things that can lead to neuropathy if you have HIV. The virus itself causes inflammation that can damage your nerves. Your chances for neuropathy also go up if you’re older than 50 and you have a lot of HIV in your body. (Doctors call it a high viral load.)
Some of the drugs that treat HIV also can help cause neuropathy. This is especially true for a group of medicines known as “d-drugs” or NRTIs. (Your doctor might call them nucleoside reverse transcriptase inhibitors.) These include:
Some of the illnesses and infections more common in people with HIV can cause neuropathy, too. For example:
The drugs that treat some HIV-related conditions can also cause nerve damage. They include:
- Vincristine (Marqibo, Vincasar PFS) for certain cancers like Kaposi sarcoma
- Isoniazid (Niazid) and ethambutol (Myambutol), which treat tuberculosis
- Dapsone (Aczone) for some forms of pneumonia like PCP, called Pneumocystis jirovecii
- Thalidomide (Thalomid), a treatment for mouth ulcers
- Nevirapine (Viramune), which is used to treat HIV infection
The most common ones for neuropathy are
- Stiffness in your toes and the soles of your feet
These usually show up slowly, over a period of weeks or months. In some cases, you might feel them in your fingers and hands, too.
When it’s bad, it may hurt just to touch something. In serious cases, you may have so much pain or weakness that you find it difficult to stand or walk.
Symptoms may also come and go.
Your doctor can probably tell if you have neuropathy from a simple physical exam and medical history. In some cases, they might want to take a small piece of skin or muscle to look at under a microscope. Your doctor would call it a biopsy.
Blood tests might help rule out other causes of neuropathy, including:
- High blood sugar
- Hepatitis C
- Thyroid problems
- Low levels of vitamin B12 and folate
- Kidney problems
Special tests can help your doctor figure out where you have nerve damage and how serious it is. These include:
Nerve conduction study (NCS): Small patches on the skin send a quick pulse of electricity to different nerves. A machine measures how well and how quickly the nerves carry the signal.
Needle electromyography (EMG): A thin needle goes into a muscle to measure electrical activity between a nerve and the muscle.
How your neuropathy gets treated will depend on the type of neuropathy you have (whether it affects one nerve or several) and what caused it. If your HIV itself is the culprit, your doctor will keep track of your viral load and try to keep it down with medication.
If HIV medication causes your neuropathy, your doctor will likely adjust your treatment program and perhaps switch or stop some of the drugs you take.
Stopping some of these medications (d-drugs) can actually make your neuropathy symptoms worse for a few weeks before they start to improve.
Your doctor might suggest or prescribe drugs to ease your pain and help your nerves work better. These could include:
- Non-steroidal anti-inflammatories (NSAIDs) like ibuprofen
- Anti-seizure medications
- Analgesics (like opiates and topical creams)
Also, there are things you can do at home to feel better. For example: