Sunday, 23 November 2014

Is Intravenous Immune Globulin The Answer To Neuropathy Problems?

Today's post from (see link below) is a St Louis Post Despatch, letters-to-the-doctor example, which asks the question whether Intravenous immune globulin is the answer to the neuropathy patient's problem. It's a specific question relating to a specific case but if it's  got you curious as to what IVIG is, then you may want to research further to see if it's a possibility for you.

IVIG is primarily for autoimmune neuropathy 
Dr. K Roach November 06, 2014 12:00 am 
Dr. Keith Roach is a physician at Weill Cornell Medical College and New York Presbyterian Hospital.Readers may email questions to or request an order form of available health newsletters at P.O. Box 536475, Orlando, Fla. 32853-6475

Dear Dr. Roach
• My brother has been treated for peripheral neuropathy for the past 10 years. He turns 60 in October. After an MRI found a left parietal tumor, he was seen by a prominent neurosurgeon who felt that the tumor had been there since birth and is not connected to the symptoms of pain and decreased sensation in his feet and hands. He is not diabetic, has no cardiovascular problems and does not use alcohol. Basically, all tests come back normal. For now, they just monitor the tumor.

My brother resisted taking any narcotics until three years ago and is now on a long-acting narcotic twice a day. The physicians seem to think this is a genetic/autoimmune problem, and my brother is less inclined to keep searching for help.

My question is: Would a trial of IVIG infusion therapy be reasonable? I don’t know if his bloodwork supports checking his immune status, but I am not sure that the results necessarily would reflect the problem. I have read of IVIG use for some neuropathies, but before I try to get my brother to see a neurologist again, I would like to know if this is a possible therapy to try. — M.S.

Answer • Peripheral neuropathy is one of the most frequent topics I get questions about, but it is very difficult to answer the questions, because there are many different kinds of peripheral neuropathies (“peripheral” means the part of the nervous system outside the brain and spinal cord, while “neuropathy” simply means that something is wrong with the nerve).

In general, peripheral neuropathies can be broken down into several categories. Diabetes is the most prevalent one I see, but those caused by prolonged alcohol use and HIV are other common types. Some are indeed autoimmune, such as Guillain-Barre. Other toxins besides alcohol, especially chemotherapy, may cause symptoms in the peripheral nerves. There are genetic or hereditary causes that are relatively rare. Other important causes include infection, especially Lyme disease; hypothyroidism; vitamin deficiencies; and amyloidosis. One cause I see rarely is called paraneoplastic, associated with an existing tumor. That is one way the tumor in the parietal area of the brain could possibly cause the neuropathy.

If the underlying condition can be treated, it should be, but it sounds in your brother’s case that despite looking, his doctors haven’t been able to find a cause. About 1/4 of cases of peripheral neuropathy fall into the idiopathic, or unexplained, category. Intravenous immune globulin is used primarily for the autoimmune types of neuropathy. Only his neurologist can say if it’s right for him.

When the underlying condition can’t be treated, then we rely on medications to ease symptoms. While opiates are sometimes needed, most experts try to avoid them, because the body can get used to them over time. Probably the most effective medications for neuropathies are antidepressants (the older tricyclic antidepressants, such as amitriptyline) and seizure medicines, such as gabapentin (Neurontin) and pregabalin (Lyrica). I always recommend physical therapy, because movement prevents weakness and may improve symptoms.

Saturday, 22 November 2014

Fluoroquinolone Antibiotics Should Carry Psychiatric Warnings

Today's interesting post from (see link below) is another strong article about the problems brought about by certain antibiotics - namely fluoroquinolones. This time, it calls for warnings about psychiatric damage as well as nerve damage from these drugs and provides good background information to the argument. Always discuss the dangers with your doctor if he or she wishes to prescribe these for you.

Psychiatric Warning Should Join Antibiotic Peripheral Neuropathy Warnings, According to FDA Citizen Petition  Written by: Irvin Jackson September 22, 2014

Amid mounting concerns about the risk of peripheral neuropathy from antibiotics like Levaquin, Cipro, Avelox and others, a citizen petition has been filed with the FDA calling for a new black box warning for the entire class of medications to alert users to the risk of psychiatric problems, as well as nerve damage.

Dr. Charles Bennett, of the University of South Carolina, submitted a citizen petition to the FDA last week, calling for the entire class of antibiotics known as fluoroquinolones to receive a new boxed warning, which is the strongest warning the agency can require drugs to carry.

According to the petition, consumers should be provided stronger warnings about the potential pyschiatric side effects of Levaquin, Cipro, Avelox and other members of the same class of drugs, which have been linked to problems like hallucinations, paranoia, amnesia, suicidal thoughts and other mental side effects.

Earlier this summer, Dr. Bennett and the Southern Network on Adverse Reactions (SONAR) filed a similar petition calling for a black box warning on mitochondrial toxicity for the antibiotics, which can lead to severe nerve problems, such as peripheral neuropathy and other health problems.

The petitions have been supported and promoted by the Quinolone Vigilance Foundation, an activist group formed of former antibiotics users who suffered severe side effects after taking the drugs. The group announced the latest citizen petition in a press release on September 15.

Dr. Bennett warns that psychiatric adverse events linked to the use of Cipro, Levaquin and similar antibiotics are a major problem. He calls for a black box warning that advises users that the psychiatric side effects could start during treatment, or may not appear until days, weeks or even months after patients have taken the last dose.

“Although there are numerous psychiatric adverse events on the current fluoroquinolone drug labels, they are essentially hidden under the heading, ‘Central nervous System Effects,'” Rachel Brummert, Executive Director of the Quinolone Vigilance Foundation, said in the press release. “Most people would not look under ‘Central nervous System Effects’ to find information about suicide, hallucinations, paranoia, or panic attacks. A specific heading for ‘Psychiatric Adverse Events’ is badly needed.”

Antibiotic Peripheral Neuropathy Risk

The psychiatric concerns come as concerns have continued to increase about the link between fluoroquinolone antibioitics and perhipheral neuropathy, which can cause long-lasting and permanent nerve damage for some users.

Symptoms of peripheral neuropathy from Levaquin, Cipro, Avelox and other related drugs may include pain, burning, tingling, numbness, weakness, and sensitivity to light touches, temperature and motion in the arms and legs.

In August 2013, the FDA issued a drug safety communication warning about the risk of peripheral neuropathy from the antibiotics, suggesting that the problems may surface at any time after using the drugs and may continue for months or years after the medication is discontinued.

The FDA required the drug makers to add new warnings and information to the antibiotic labels, indicating that individuals should seek medical treatment if they experience symptoms of peripheral neuropathy and encouraging doctors to switch patients to another antibiotic from a different class if nerve damage is suspected.

Researchers Back FDA Findings

The peripheral neuropathy warning came as new research appeared to strengthen the connection between Levaquin and similar drugs and nerve damage that could be permanent in some cases.

About two months after the SONAR petition, filed in June, researchers from the University of British Columbia found that new users of oral fluoroquinolones could have twice the risks of suffering peripheral neuropathy as their peers who do not take the drugs.

The findings, published on August 22 in the medical journal Neurology, appeared to support warnings issued by the FDA last year, indicating that all fluoroquionolones may carry a peripheral neuropathy risk.

Dr. Bennett warns that the cause may be mitochondrial toxicity, which has been linked to a number of neurodegenerative diseases, such as Parkinson’s Disease, and ALS.

Fluoroquinolones are among of the most widely used antibiotics in the United States, including Levaquin, Cipro, Avelox, Noroxin, Floxin and Factive. The class has already been linked to a potential risk of tendon ruptures, retinal detachment, and possible kidney problems.

According to the FDA, there are about 23.1 million patients who received a prescription for an oral fluoroquinolone in 2011. Cipro dominated the market, comprising 70% of those prescriptions, followed by Levaquin or a generic equivalent, which was used by 28%. Another 3.8 million patients received injections in 2011, with Levaquin or a generic equivalent making up 63% of those, followed by Cipro at 28%.

A number of former users who have experienced problems with peripheral neuropathy or psychiatric problems after using the antibiotics are now considering Levaquin lawsuits, Cipro lawsuits and Avelox lawsuits against the manufacturers, alleging that insufficient warnings have been provided for consumers and the medical community for years.

Friday, 21 November 2014

Peripheral Neuropathy And Hepatitis

Today's post from (see link below) is a very useful one for people living with hepatitis C, who also suffer neuropathic problems as a result. You won't find too much information on the net about the two diseases together but this article tries to show why neuropathy can be hepatitis (HCV) -related and once again, it's the treatment of the one disease, that may lead to the other occurring. Unfortunately hepatitis C is a serious problem and the numbers are growing. There are new treatments just coming onto the market but it remains a very difficult viral disease to treat and then with neuropathy on top...well you know the rest. The only light point (if you can call it that) is that the treatment for HCV-related neuropathy is much the same as for most other forms of neuropathy - there are no real deviations just because of the cause and neuropathy patients will recognise the recommendations and suggestions shown here.

HCV – Peripheral 

Neuropathy (PN)

Written by: Alan Franciscus, Editor-in-Chief Hepatitis C Support Project


Neuropathy is a medical term for any disease of the nerves. There are
four major forms of neuropathy – polyneuropathy, autonomic neuropathy,
mononeuropathy and the most common form, peripheral polyneuropathy
– more commonly called peripheral neuropathy (PN). Peripheral neuropa
thy damages the nerves in the legs and arms. Usually the first area that
PN affects is the feet and legs before the hands and arms. This fact sheet
will discuss the HCV-related form of peripheral neuropathy including the
cause, symptoms, and treatments.


The exact cause of HCV-related PN is not completely understood, but
there is some speculation that it could be caused by HCV RNA (viral
load) deposits in blood vessels that supply oxygen to the nerves,
HCV infection of the nerves, an inflammation process in the nerves,
and/or an HCV-related immune disorder. In the past it was believed
that only people with cryoglobulinemia developed HCV-related PN
but it has been proven that HCV-related PN can occur even in the
absence of cryoglobulinemia. Studies have found that up to 15.3% of
the HCV population has PN. If HCV is the cause of PN it would make
sense to treat the cause.

Important note:

Everyone with hepatitis C should be evaluated and receive HCV treatment. Current treatment is very expensive, and some insurance companies and Medicaid/Medicare are restricting HCV treatment to people with the most severe HCV disease. One of the conditions that qualify people for HCV treatment are extrahepatic manifestations. Discuss any symptoms with your medical provider and have them recorded in your medical records. If you are not approved
for the drugs to treat hepatitis C, you may qualify for free drugs or co-pay assistance through a pharmaceutical patient assistance program. More information is available at the end of this fact sheet.

Causes and Risk factors for PN include:
Infections such as hepatitis C, Lyme disease, shingles, Epstein-Barr, and HIV
The most common cause of PN is diabetes – it is estimated that 34% of the diabetic population has PN. This compares to a prevalence of 2.4 - 8% in the general population
Chronic alcohol abuse
Vitamin B deficiencies
Various autoimmune diseases such as lupus
and rheumatoid arthritis
Environmental toxins
Medications, such as HIV medications


The most common symptoms of PN are HCV therapy.
Self-Care Tips:

A healthy lifestyle can help manage PN and the symptoms associated with it. These lifestyle modifications include:
– can help to reduce some of the symptoms, increase overall muscle strength,
increase blood circulation, and prevent muscle wasting or atrophy.
– Eat a healthy diet that will improve overall health and which may help with the gastrointestinal symptoms people with PN experience.
– Cigarette smoking constricts the blood vessels that provide oxygen and nutrients to peripheral nerves. Seek professional services to stop smoking.
– Alcohol abuse is a leading cause of PN. Avoid or greatly reduce alcohol use.
– especially to areas that are affected by PN (hands/feet) will stimulate, relax and may lessen some of the pain
Do not put too much pressure on limbs-legs and elbows such as crossing legs for a long period of time.

Foot Care
As discussed earlier PN usually affects the feet and legs first. Because NP can cause loss of sensation to the lower extremities it is very important that people with PN pay special attention to their feet. The loss of sensation caused by PN can lead to unrecognized cuts, blisters and other damage to the feet. If a condition or injury goes unchecked it could lead to infections and ulcerations that may spread to the bone. Severe bone infection can lead to amputation of the infected bone. There are many ways to take care of and protect your
feet. The American Diabetes Association (ADA) recommendations for foot care can be easily adapted to everyone with PN:
Check all the areas of the feet every single day. Look for red spots, cuts, swelling and blisters. If you can not see the bottom of your feet, use a mirror or ask someone to inspect them for you.
Be more active (exercise and stretching).
Wash your feet everyday. Dry them carefully, especially between the toes.
Moisturize your feet daily (but not between the toes).
Never go barefoot – always wear comfortable shoes and socks. This is because people with PN can cut or damage their feet and may not even notice or feel the pain.
Keep toe nails trimmed so that the nails don’t rub or cut nearby toes.
Be careful not to expose your feet to hot and cold temperatures.
Keep the blood circulating throughout the feet. The ADA recommends wiggling your ankles up and down for 5 minutes – two or three times a day. Don’t cross your legs for long periods of time.
Stop smoking cigarettes.
Check with your medical provider about the need for special shoes (orthotics).