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Avoiding & managing side effects – May 2008
Contents. 
Efavirenz (Sustiva). 
Peripheral neuropathy 
Liver toxicity, rash and nevirapine.
peripheral = furthest away, neuro = nerve, pathy = damage
Associated drugs: ddC (Hivid), d4T (Zerit), ddI (Videx), 3TC (Epivir)
Peripheral neuropathy (PN) was a common side effect from some of the first anti-HIV drugs but it is rarely reported with more modern drugs.
It is still is major problem in countries that continue to use d4T.
It can also be caused by HIV itself. It is sometimes difficult to know the cause but if the numbness or pain is symmetrical in both hands or both feet it is more likely to be a side effect than related to HIV.
Symptoms include increased sensitivity or numbness, or tingling in your hands and/or feet. Often it is something you hardly notice, or that comes and goes.
If neuropathy gets worse it can become very painful. It is a side effect that you should take very seriously.
PN is mainly associated with nucleosides, especially the ‘d’ drugs. These are ddC (no longer manufactured), ddI, d4T and less frequently with 3TC.
Using more than one of these drugs together can increase the risk as can use of other drugs such as hydroxyurea, dapsone, thalidomide, isoniazid and vincristine.
Alcohol, smoking, amphetamines, deficiency of vitamins B12 and E and other illnesses like diabetes and syphilis can also cause and make neuropathy worse; B12 and folate levels can be tested.
Simple tests for neuropathy include comparing ankle to knee reflexes, or using a pin to test sensations from the toes up the leg. A tuning fork will show a reduced vibration in a foot with neuropathy.
Recent studies have measured nerve damage in skin in a biopsy sample.
Your doctor may just rely on what you report is happening. If your symptoms are causing you discomfort or pain, you must make sure it is taken seriously.
Sometimes doctors underestimate how much pain people experience because they think that their patients always exaggerate pain. In fact, most people underestimate pain when talking to their doctor.
Sensitivity tests that measure your reactions to different pressure, are not used so frequently, and it can sometimes take 4-6 weeks to get the results. Getting these results recorded regularly though can help you measure any worsening of the symptoms.
The earlier you switch treatment, and the less severe the side effects when you switch, the more likely that the symptoms will reverse, but this does not happen for everyone.
Moderate and severe neuropathy very rarely resolves fully but switching drugs can stop the symptoms getting worse. If you have other drugs to use, switching at the first sign of symptoms may be the best thing you can do. Neuropathy can be irreversible and debilitating.
If d4T is the cause of your neuropathy you can reduce the twice daily 40mg dose to 30mg or even 20mg twice daily.
Your choices to switch drugs depend on your previous drug history and you should talk through the possibilities with your doctor. You still have to consider your HIV treatment but avoidance of neuropathy altogether is the best way of treating it.
If you do stop using the drug you think is responsible then you may have to wait up to two months to know how much this has helped. Often symptoms can continue to get worse before you notice an improvement.
There are currently no approved treatments to repair or regrow damaged nerves. One study has shown that acetyl-L-carnitine (Alcar) at a dose of 1500mg, twice daily, can lead to nerve improvement. Acetyl-L-carnitine can be prescribed on a named-patient basis. Some clinics in the UK already use this treatment routinely.
There are currently no treatments that are approved to repair or regrow damaged nerves. One study has shown that L-acetyl carnitine (Alcar) at a dose of 1500 mg, twice daily, can lead to nerve improvement. L-acetyl carnitine can be prescribed on a named-patient basis. Some clinics in the UK already use this treatment routinely. Research into a synthetic human Nerve Growth Factor (hNGF) in the US which looked promising has since been put on hold and the development has been stopped.
Research into a synthetic human Nerve Growth Factor (hNGF) in the US which looked promising has since been put on hold and the development has been stopped.
Treatments which are prescribed to manage neuropathy are basically used to mask the pain. Sometimes these painkillers can have side effects themselves which make them difficult to use.
Amitriptyline, nortriptyline and gabapentin don’t reduce the pain, but change how your brain perceives it. Gabapentin (licensed at 600mg, three times a day, though some reports of 1200mg have been used in the US) may help. These drugs work for some people but others find them too difficult – even when they ease the pain from neuropathy - because they make them feel too drowsy.
Opiate-based painkillers such as methadone, morphine and codeine, although not always appropriate for neurological damage, sometimes help with severe symptoms. It sometimes takes several days to find the appropriate dose, and these drugs can interact with some HIV drugs. A side effect of opiates is constipation.
You should also have appropriate care from a pain control nurse specialist, rather than your HIV doctor. They will be able to make a full assessment of your level of pain, and adequately prescribe medication to reduce it.
More rarely, when pain is so great that it is not treatable, alcohol can be injected into a nerve junction. Nerve blocks can be very effective when they work, and are a specialist procedure, but can also cause loss of sensation and sometimes produce unpredictable results.
Neuropathy can be very painful and debilitating... It is a side effect that you should take very seriously.
Treatments that may help:
Alternative treatments often produce a more acceptable, and more effective, way of managing neuropathy.
Although not proven in studies, there has been substantial anecdotal reports on all of the approaches listed below. With a condition that is so painful, it is worth trying all of these in case they help.
Acetyl-L-carnitine (Alcar) is a supplement that has been effective in small studies and anecdotally.
Acupuncture is a lifeline for many people who report improved quality of life. A study comparing acupuncture to placebo showed no benefit, but the acupuncture was a standardised rather than individualised treatment. It is definitely worth trying to decide for yourself.
Magnets – Using magnetic insoles have reported benefits in diabetic-related neuropathy.
Local anaesthetic creams such as Lidocaine (5%), and Lidocaine patches reported benefit in a recent study.
Capsaicin – Topical cream made from chilli peppers that causes increased local blood flow when applied to the skin. Mixed reports, many of them not encouraging.
Voltarol (NSAID)– a nonsteroidal anti-inflammatory.
Alpha-Lipoic Acid – 600 to 900 mg daily may help protect nerves from inflammation.
Cod liver oil – One or two tablespoons a day has anecdotally produced beneficial reports, especially if the symptoms have not become very severe. This is not as bad as it sounds as modern oils are palatable and also come in flavours.
Topical aspirin – suggested in one recent study that aspirin, crushed and dissolved in water or gel and applied to the painful area can relieve symptoms.
Vitamin B6 (pyridoxine) – requires caution with dosing as B6 can also worsen neuropathy (100 mg daily is sometimes recommended).
Vitamin B12 – available as injections, lozenges, nosegel. B12 levels should be checked by your doctor. Dosage varies but if levels are too high this can worsen neuropathy.
Magnesium – 250 mg – 2 capsules each morning.
Calcium – 300 mg – 2 capsules each evening.
Useful recommended reference books written in non-technical language are Numb Toes and Aching Soles (July 1999) and Numb Toes and Other Woes (July 2001) both by John A. Senneff. ISBN: 0967110718 and 0967110734.
Useful websites:
Contents. Efavirenz (Sustiva). Peripheral neuropathy Liver toxicity, rash and nevirapine.
This is the
web edition of the i-Base guide Avoiding & managing side effects.
This guide is available in UK clinics. You can order
free printed copies or download
a PDF version (564 Kb). There are also several translations. Decisions relating to your treatment should always be taken in consultation with your doctor. Information in this guide is intended to support those discussions
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