Living with lupus and persistent nerve pain means an ongoing search for relief. Some members of MyLupusTeam have tried gabapentin to relieve their pain.

Gabapentin (Neurontin, Gralise) can sometimes be prescribed off-label for nerve pain related to lupus. Off-label means the U.S. Food and Drug Administration (FDA) has not specifically approved the drug for this use.

Gabapentin can also pose serious risks. If you’re thinking about taking gabapentin, it’s important to learn how it controls nerve pain and understand the risks associated with it. Discuss these factors with your doctor to decide whether gabapentin is right for you.

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What Is Lupus Neuropathy?

Can lupus cause neuropathy? Yes. Lupus neuropathy occurs when lupus is linked to damage in the peripheral nerves, which carry signals between the brain and spinal cord and the rest of the body.

Lupus can damage these nerves in several ways.

The immune system may mistakenly attack or inflame nerves. Lupus can also cause inflammation of blood vessels that supply blood to nerves. This inflammation, called vasculitis, can reduce blood flow to a nerve and cause damage.

Peripheral neuropathy can cause weakness, numbness, and pain, often in the hands and feet. The pain is often described as stabbing, burning, or tingling. Some people have also reported increased sensitivity to touch.

Another painful condition found in many people with lupus is fibromyalgia. Fibromyalgia is not a type of peripheral neuropathy or a nervous system complication of lupus. It is a separate chronic pain condition that can occur alongside lupus.

Approximately 20 percent of people with lupus also have fibromyalgia. It can cause widespread pain, fatigue, trouble sleeping, and problems thinking. Other symptoms may include:

• Tingling sensation
• Tenderness
• Stiffness
• Headaches
• Lightheadedness

Persistent pain from peripheral neuropathy or fibromyalgia can lead to physical and mental stress and affect quality of life.

Treatment for lupus and nerve pain depends on what it is causing the pain. Lupus meds for pain and other treatments may include:

• Pain relievers like nonsteroidal anti-inflammatory drugs (NSAIDs)
• Anti-seizure medications like gabapentin and pregabalin
• Antidepressants like amitriptyline and duloxetine

Prescription opioids may sometimes be considered for certain types of severe pain. However, they generally aren’t preferred for long-term neuropathic pain. They also aren’t routine treatments for fibromyalgia because their long-term benefits are limited and they carry serious risks, including dependence and overdose.

Gabapentin and Pregabalin

Gabapentin is an anti-seizure medication used to treat certain types of seizures. Along with pregabalin, it belongs to a class of drugs called gabapentinoids.

Gabapentin and pregabalin work in similar ways, but one shouldn’t simply be considered stronger or faster-acting than the other. The body absorbs and processes these medications differently. Their doses cannot be directly compared, and the drugs aren’t interchangeable.

Their FDA-approved uses also differ:

• Standard gabapentin products are approved for seizures and, depending on the product, nerve pain that can continue after shingles.
• Gabapentin enacarbil is approved for moderate to severe primary restless legs syndrome and nerve pain after shingles in adults.
• Pregabalin is approved for certain seizures, fibromyalgia, and several types of nerve pain, including pain related to diabetes, shingles, and spinal cord injury.

Gabapentin for Lupus Nerve Pain Management

Gabapentin is sometimes used to manage neuropathic, or nerve-related, pain in people living with lupus. However, research specifically studying gabapentin for lupus neuropathy is limited. Much of the evidence for its pain-relieving effects comes from studies of other types of neuropathic pain.

Gabapentin avoids some of the risks linked to opioids because it works differently. However, that doesn’t mean it’s risk-free.

Gabapentin can cause sleepiness and dizziness and, in some people, serious breathing problems. The risk may be higher when it is combined with opioids or other medications that slow the central nervous system.

MyLupusTeam members shared their experiences with gabapentin:

• “I have been on gabapentin for many years. I never really noticed any side effects, and it definitely helps lessen my pain.”
• “I have taken gabapentin for years now. It definitely helps with my neurological problems — shooting pain in my temples. Also seems to help a bit with my spinal pain.”
• “I started a medication called gabapentin along with my other meds. I actually slept last night for the first time in months.”
• “I just started gabapentin last week. I take it at bedtime for neuropathy in my feet. It has helped so far and also helps me sleep!”

These comments describe individual experiences. Gabapentin may work differently for each person, so these experiences don’t show how well it will work for everyone.

Risks of Using Gabapentin

Although it can be an effective option for managing nerve pain, gabapentin also has significant risks. Possible side effects of gabapentin include:

• Drowsiness
• Serious breathing problems in people with certain risk factors
• Swelling in the arms or legs
• Dizziness
• Mood swings
• Suicidal thoughts
• Vision problems
• Weight gain

Kidney function is important when taking gabapentin. The drug leaves the body mainly through the kidneys.

If the kidneys aren’t working well, gabapentin can build up in the body, so your doctor may need to lower the dose. Kidney impairment itself should not be considered a typical gabapentin side effect.

In addition, the FDA has issued a warning about serious breathing problems with gabapentin and pregabalin.

The risk is higher for people taking opioids or other medications that slow the central nervous system. These can include antianxiety medications such as benzodiazepines, some antidepressants, antipsychotics, and antihistamines that cause sleepiness.

People with breathing conditions such as chronic obstructive pulmonary disease (COPD) may also face a higher risk. Older adults are another high-risk group for breathing problems with these medications.

MyLupusTeam members shared their experiences with gabapentin side effects:

• “I have to take gabapentin before bed because I get really loopy with it. I also need to time when I take it because if I take it too late, I feel like I am hungover in the morning.”
• “Gabapentin causes me major mood swings, and that is why I only take it if I have to.”
• “I started gabapentin last Saturday. Has anyone else experienced mega mood swings? I feel very agitated. Things that would normally not make me nuts are frustrating me beyond all reason!”

Note: If you or someone you know needs help, you can contact the 988 Suicide & Crisis Lifeline by calling or texting 988 or using the online chat.

Talk With Your Healthcare Provider

For some people living with nerve pain caused by lupus, gabapentin may help reduce symptoms. However, it doesn’t work the same way for everyone and can cause serious side effects.

Talk to your healthcare provider before starting gabapentin to learn about its benefits and risks. Your doctor may start you at a low dose and gradually increase it if needed. Always tell your doctor about other medications you take, including over-the-counter medications, because some combinations can increase the risk of serious side effects.

If you take gabapentin regularly, don’t stop taking it suddenly without medical advice. Stopping suddenly can cause problems and may increase seizure risk in people who take it for seizures. When it’s time to stop gabapentin, a healthcare professional can help you gradually lower, or taper, the dose.