This article by Jane E Brody, from the New York Times, via an Indian newspaper, The Deccan Herald (see link below), is another general description of how neuropathy affects most people but as every article of this sort approaches it from a slightly different angle and uses various different examples and resources, they all add to our knowledge of how the disease works. It's important in all these generalised descriptions of neuropathy to be able to recognise yourself somewhere in them, so while the one may seem less relevant to your situation, the other hits the nail right on the head.
Devastating effects of peripheral neuropathy
By Jane E Brody
Damage to one or more of the myriad nerves can cause disabling pain or even paralysis
If you have ever slept on an arm and awakened with a ‘dead’ hand, or sat too long with your legs crossed and had your foot fall asleep, you have some inkling of what many people with peripheral neuropathy experience day in and day out, often with no relief in sight.
And numbness and tingling are hardly the worst symptoms of this highly variable condition, which involves damage to one or more of the myriad nerves outside the brain and spinal cord. Effects may include disabling pain, stinging, swelling, burning, itching, muscle weakness, twitching, loss of sensation, hypersensitivity to touch, lack of coordination, difficulty breathing, digestive disorders, dizziness, impotence, incontinence, and even paralysis and death.
I realise now that I had a mild, reversible bout of peripheral neuropathy several decades ago when a misplaced shot of morphine damaged a sensory nerve in my thigh. It took three years for the nerve to recover, and for much of that time I could not tolerate anything brushing against my leg.
One of my sons, too, was afflicted when a nerve behind his knee was injured during a basketball game. He had no feeling or mobility in his foot for nine months, but after several years the nerve healed and he regained full use of his foot.
And a good friend was nearly paralysed, also temporarily, following a flu shot, by a far more serious form of peripheral neuropathy — an autoimmune affliction called Guillain-Barre syndrome, in which one’s own antibodies attack the myelin sheath that protects nerves throughout the body.
There are hundreds of forms of peripheral neuropathy. A medical guide describing them, compiled by a team of neurologists at the behest of the Neuropathy Association, fills a booklet the size of a two-year wall calendar.
The association, which sponsors research and provides education and support for patients and families dealing with peripheral neuropathy, estimates that the disorder afflicts more than 20 million Americans at any given time. If the cause can be corrected, peripheral nerves can regenerate slowly and patients can recover, although not always completely.
But many people never recover. They must learn to live with the disorder, with the help of treatments and devices that can ease their discomfort and disability. With such a wide array of symptoms and causes, getting a correct diagnosis is often a challenge. Worse, frustrated patients are sometimes told, “It’s all in your head.”
Causes behind ailment
There are three types of peripheral nerves: sensory nerves, which transmit sensations like pain, touch, heat and cold; motor nerves, which control the action of muscles throughout the body; and autonomic nerves, which regulate functions that are not under conscious control, like blood pressure, digestion and heart rate. Symptoms of neuropathy depend on what nerves are involved.
Someone with damaged sensory nerves might not feel heat, for example, and could be scalded by an overly hot bath. Neuropathy of the motor nerves can result in weakness, lack of coordination or paralysis; neuropathy of the autonomic nerves can lead to high blood pressure, irregular heart rate, diarrhea or constipation, impotence and incontinence.
The list of possible causes of neuropathy is far too long for this column. They include inherited conditions like Charcot-Marie-Tooth disease; infections or inflammatory disorders like hepatitis, Lyme disease, AIDS, rheumatoid arthritis and lupus; organ diseases like diabetes, hypothyroidism and kidney disease; exposure to toxic substances like industrial solvents, heavy metals, sniffed glue and some cancer drugs; trauma to or pressure on a nerve from an injury, cast, crutches, abnormal body position, repetitive motion, tumour or abnormal bone growth; alcoholism; and deficiency of vitamin B12.
The most common cause, accounting for nearly a third of neuropathy cases, is diabetes, especially among those whose blood sugar levels are poorly controlled. Half of all people with diabetes eventually begin to lose sensation and develop pain and sometimes weakness in their feet and hands. In people with diabetes, even minor injuries to the feet, if not quickly and properly treated, can result in gangrene and amputations.
In nearly a third of cases, no cause is ever found, leaving patients with no other recourse than treatment of their symptoms.
Suspected cases are best referred to a neurologist, who should begin by taking a complete personal and family medical history and performing a physical and neurological examination, checking on reflexes, muscle strength and tone, sensations, balance and coordination.
A complete workup is likely to include blood tests, urinalysis, a nerve conduction study and electronic measurements of muscle activity. Imaging studies, like a CT scan or an MRI, may reveal a tumour, vertebral damage or abnormal bone growth. In some cases, a nerve or muscle biopsy may be done.
Relief and restoration
If the underlying cause cannot be corrected, the goals of treatment are relief of symptoms and restoration of lost functions. Pain control is paramount. Effective relief may come from over-the-counter remedies or a lidocaine patch but sometimes requires prescribed opiates.
Many with neuropathic pain have benefited from drugs licensed for other uses, including antiseizure medications like gabapentin, topiramate (Topamax) and pregabalin (Lyrica) and antidepressants like the tricyclic amitriptyline and the selective serotonin and norepinephrine reuptake inhibitor duloxetine (Cymbalta). Vitamin B12 deficiency can be treated with supplements and fortified cereals or by judicious consumption of meats, poultry, fish, eggs and dairy products.
And since alcohol and tobacco are particularly risky for people with neuropathy, or a health problem that predisposes them to it, they have every reason to quit smoking and to drink only in moderation.
Many patients are helped by physical therapy, occupational therapy and devices like braces, splints and wheelchairs. Railings on stairways and in the bathroom, elimination of tripping hazards like scatter rugs, and improved lighting (including night-lights) can reduce the risk of falls. For those insensitive to heat, a thermometer should be used to test water in a tub, shower or sink. Orthopedic shoes are invaluable to patients with lost sensitivity in their feet or impaired balance.
A variety of mechanical aids can make it easier to live with peripheral neuropathy, among them kitchen tools made by Oxo. Those with digestive problems might try eating small frequent meals and sleeping with their heads elevated.
Other helpful sources include the book ‘Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop’ (‘Demos Health’, 2006), by Dr Norman Latov. The association maintains a list of support groups and of centres that specialise in diagnosing and treating neuropathy.
The New York Times
http://www.deccanherald.com/content/39347/devastating-effects-peripheral-neuropathy.html
This is more a general post explaining why HIV medication sometimes causes side effects and what they might be. Of course, neuropathy features strongly amongst those. It's from a U.K. site called 'Positive Gay Guide' (see link below)and is useful background information for any HIV patient.
Side effects of anti-HIV drugs
Side effects from anti-HIV drugs occur either because of an allergic reaction to the drugs, or because of the action of the drugs themselves. HIV enzymes that anti-HIV drugs target are similar to the enzymes your body needs to function normally. When you take anti-HIV drugs they don’t only inhibit the enzymes in HIV, they can also start to affect your body’s own enzymes causing unwanted side effects.
Anti-HIV drugs are very powerful, and so it takes time for your body to adapt to them. There are ways to cope with side effects when they happen. The most common side effects such as nausea or diarrhoea can be managed with anti-nausea or anti-diarrhoea medication. Another common side effect in the short term is a body rash, and this can often be managed with antihistamines. However, a rash can also be a sign of a more serious allergic reaction which we talk more about later on this page. For this reason, if you do get a rash you should go to see your doctor straight away.
Your doctor will use your regular blood tests to monitor you for a wide range of problems that anti-HIV drugs can cause, such as anaemia (which is a deficiency of red blood cells) and kidney or liver toxicity. If the drugs were causing any of these problems then they would be spotted during your routine appointments and blood tests.
Since most side effects disappear after a while many people decide to push through the first month or so, as long as the side effects are not too severe. Make sure you always tell your doctor about any side effects you experience since he or she will need to check that nothing serious is going on.
Obviously, if the side effects are too severe then you and your doctor would want to think about changing one or more of the anti-HIV drugs you are taking to a combination that you would find easier to tolerate.
We talk more about this in the section on changing treatment.
It’s important to note here that you should never just stop taking your anti-HIV drugs, even if the side effects are really bad, without the advice of your HIV doctor. He or she will be able to tell you how to change to a different combination with minimal risk of developing drug resistance to your anti-HIV drugs.
Drinking alcohol or taking certain recreational drugs can make side effects more severe. For instance, ecstasy can increase the levels of the protease inhibitors in your blood. This would increase the chance that you would experience severe side effects.
You can read more about alcohol and recreational drugs and how they can affect HIV and HIV treatment in the section on looking after yourself.
Severe allergic reactions
More serious side effects of anti-HIV drugs can be caused by allergic reactions to certain drugs. One of these is caused by abacavir in 4% to 8% of people who take it, and is known as a hypersensitivity reaction. There is now a genetic test which shows whether you are likely to get this reaction, although the test may not be available everywhere. If you are thinking of taking abacavir, ask your doctor about this test.
Abacavir hypersensitivity reaction usually occurs within the first 6 weeks of treatment, however it can occur at any time and so people taking abacavir are advised to carry a warning card in their wallets. All boxes of abacavir, Kivexa or Trizivir (which both contain abacavir) have a pull out warning card which you should carry with you.
The symptoms of hypersensitivity reaction get steadily worse over a few days and can include a rash, fever, gastrointestinal problems, nausea and vomiting. If you develop these symptoms after starting abacavir you should go to see your doctor immediately. If you were diagnosed with a hypersensitivity reaction then your doctor would ask you to stop taking abacavir. Once you have stopped taking abacavir you must never take it again. Taking abacavir again after you had a hypersensitivity reaction the first time can lead to a very quick and severe allergic reaction which can be fatal.
Metabolic changes
Metabolic changes refer to changes to certain chemical or physical processes used by your body, such as the way it converts fat into energy. Your doctor will keep an eye on certain indicators of metabolic changes each time you have your regular blood tests, such as your cholesterol levels.
It’s unclear why some people experience metabolic changes when taking anti-HIV drugs, however those that have been seen in people with HIV include high cholesterol, diabetes and insulin resistance, high blood sugar and high blood fats (which can be related to body fat changes, and we talk about these later on this page).
If your blood tests indicate that you are experiencing problems with metabolic changes, your doctor may recommend changing the combination of drugs you are taking to one that your body will be better able to cope with. Your doctor may also recommend that you alter your diet to help with problems such as high cholesterol or he may even suggest that you exercise more often.
You can read more about your diet and exercise in the section on looking after yourself.
Body fat changes
A long-term side effect that has been associated with certain anti-HIV drugs is lipodystrophy and lipoatrophy. Lipodystrophy is fat redistribution around the body, usually fat gain around the abdomen. Lipoatrophy is fat loss from parts of the body, often seen as facial wasting or wasting from the arms and legs. These side effects can often be managed with appropriate anti-HIV drug choices, however if you have resistance to some anti-HIV drugs your options may be limited and you may not be able to avoid the drugs that could cause lipodystrophy and lipoatrophy. Protease inhibitors have more commonly been associated with fat redistribution around the abdomen, whereas the NRTIs such as d4T, ddI and AZT have been associated with fat loss. However, other factors are also likely to contribute to lipodystrophy and lipoatrophy, including HIV infection itself.1
If you are having problems with lipodystrophy or lipoatrophy then you and your doctor could think about changing the combination of anti-HIV drugs you are taking. For example, it has been shown that men who have lost fat from their face because of taking the NRTI d4T can actually start to regain some of the lost fat when switching from d4T to abacavir, another NRTI.2
There are also reconstructive treatments for people with facial wasting. One of these is polylactic acid, also known as New Fill or Sculptra. This is given as injections into the areas on the face where fat has been lost, and it helps to stimulate collagen growth and increase the skin thickness. This is a very safe treatment, and has been shown to greatly improve the quality of life of men in a number of studies.3 However it’s not available everywhere on the NHS, and even where it is there could be a long waiting list. Speak to your doctor if you think you may be interested in finding out more.
Peripheral neuropathy
Another long term side effect of certain anti-HIV drugs is peripheral neuropathy. This is a painful condition caused by damage to the peripheral nerves, usually in the feet, legs and hands. It’s often described as feeling like burning pins and needles, and can range from mild tingling and numbness to very intense pain.
The drugs that have been associated with peripheral neuropathy are the NRTIs d4T, ddI and to a lesser extent 3TC, however peripheral neuropathy can also be caused by HIV itself. Alcohol and some recreational drugs are neurotoxins, meaning that they are toxic to the nervous system. Taking recreational drugs, such as amphetamines or cocaine, or drinking too much can make peripheral neuropathy worse.
If you do develop peripheral neuropathy from your anti-HIV drugs you and your doctor would want to change the combination of drugs you are taking if possible.
If you aren’t taking any of the drugs that are associated with peripheral neuropathy or the condition continues after stopping the drugs which could cause it, it may be that there’s another cause. Your doctor would probably do a blood test to check your vitamin B12 levels, as a B12 deficiency can cause neuropathy. It could also be HIV itself that’s the cause.
There are some treatment options available for peripheral neuropathy. The anti-convulsant drug gabapentin has been shown to improve the condition in some people, but not all. Other treatments include a low dose of amitriptyline, a drug normally used to treat depression, and acetyl-l-carnitine, an amino acid which may actually reverse the nerve damage seen in people with peripheral neuropathy. However, medical opinion is divided about how effective these and other treatments for neuropathy are. If you are experiencing pain from peripheral neuropathy that isn’t caused by any anti-HIV drugs you are taking, you could ask your doctor to refer you to a specialist neurologist who can investigate the causes further.
If you are in quite a lot of pain then you could also ask to be referred to a specialist in pain management or palliative care who will explore with you different ways to manage the pain you are in. It may be worth asking about trying a Transcutaneous Electrical Nerve Stimulator, more commonly referred to as a TENS machine. This passes a small electric current through your nerves and has been shown to be beneficial to people experiencing neuropathic pain.
You can find more information about the side effects of the specific anti-HIV drugs you are taking, or thinking of taking, on NAM’s website, Aidsmap.
http://www.gmfa.org.uk/positive/hiv-treatment/side-effects
