Sarcoidosis facts

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This is another of the autoimmune diseases I have looked up. I found my information at:  http://www.nhlbi.nih.gov. Sarcoidosis is quite invasive in that in can cause so many types of problems (not unlike lupus). In the interest of education, I am presenting this information here for those who are interested.

What Is Sarcoidosis?

Sarcoidosis (sar-koy-DO-sis) is a disease of unknown cause that leads to inflammation. It can affect various organs in the body.

Normally, your immune system defends your body against foreign or harmful substances. For example, it sends special cells to protect organs that are in danger.

These cells release chemicals that recruit other cells to isolate and destroy the harmful substance. Inflammation occurs during this process. Once the harmful substance is destroyed, the cells and the inflammation go away.

In people who have sarcoidosis, the inflammation doesn’t go away. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body.

Overview

Sarcoidosis can affect any organ in your body. However, it’s more likely to occur in some organs than in others. The disease usually starts in the lungs, skin, and/or lymph nodes (especially the lymph nodes in your chest).

The disease also often affects the eyes and the liver. Although less common, sarcoidosis can affect the heart and brain, leading to serious complications.

If many granulomas form in an organ, they can affect how the organ works. This can cause signs and symptoms. Signs and symptoms vary depending on which organs are affected. Many people who have sarcoidosis have no symptoms or mild symptoms.

Lofgren’s syndrome is a classic set of signs and symptoms that is typical in some people who have sarcoidosis. Lofgren’s syndrome may cause fever, enlarged lymph nodes, arthritis (usually in the ankles), and/or erythema nodosum (er-i-THE-ma no-DO-sum).

Erythema nodosum is a rash of red or reddish-purple bumps on your ankles and shins. The rash may be warm and tender to the touch.

Treatment for sarcoidosis also varies depending on which organs are affected. Your doctor may prescribe topical treatments and/or medicines to treat the disease. Not everyone who has sarcoidosis needs treatment.

Outlook

The outcome of sarcoidosis varies. Many people recover from the disease with few or no long-term problems.

More than half of the people who have sarcoidosis have remission within 3 years of diagnosis. “Remission” means the disease isn’t active, but it can return.

Two-thirds of people who have the disease have remission within 10 years of diagnosis. People who have Lofgren’s syndrome usually have remission. Relapse (return of the disease) 1 or more years after remission occurs in less than 5 percent of patients.

Sarcoidosis leads to organ damage in about one-third of the people diagnosed with the disease. Damage may occur over many years and involve more than one organ. Rarely, sarcoidosis can be fatal. Death usually is the result of complications with the lungs, heart, or brain.

Poor outcomes are more likely in people who have advanced disease and show little improvement from treatment.

Certain people are at higher risk for poor outcomes from chronic (long-term) sarcoidosis. This includes people who have lung scarring, heart or brain complications, or lupus pernio (LU-pus PAR-ne-o). Lupus pernio is a serious skin condition that sarcoidosis may cause.

Research is ongoing for new and better treatments for sarcoidosis.

What Causes Sarcoidosis?

The cause of sarcoidosis isn’t known. More than one factor may play a role in causing the disease.

Some researchers think that sarcoidosis develops when your immune system responds to a trigger, such as bacteria, viruses, dust, or chemicals.

Normally, your immune system defends your body against foreign or harmful substances. For example, it sends special cells to protect organs that are in danger.

These cells release chemicals that recruit other cells to isolate and destroy the harmful substance. Inflammation occurs during this process. Once the harmful substance is destroyed, the cells and the inflammation go away.

In people who have sarcoidosis, the inflammation doesn’t go away. Instead, some of the immune system cells cluster to form lumps called granulomas in various organs in your body.

Genetics also may play a role in sarcoidosis. Researchers believe that sarcoidosis occurs if:

  • You have a certain gene (or certain genes) that raise your risk for the disease
  • —And—
  • You’re exposed to something that triggers your immune system

Triggers may vary depending on your genetic makeup. Certain genes may influence which organs are affected and how severe your symptoms are.

Researchers continue to try to pinpoint the genes that are linked to sarcoidosis.

Who Is At Risk for Sarcoidosis?

Sarcoidosis affects people of all ages and races. However, it’s more common among African Americans and Northern Europeans. In the United States, the disease affects African Americans somewhat more often and more severely than Whites.

Studies have shown that sarcoidosis tends to vary in different ethnic groups. For example, eye problems due to the disease are more common in Japanese people.

Lofgren’s syndrome, a type of sarcoidosis, is more common in people of European descent. Lofgren’s syndrome may involve fever, enlarged lymph nodes, arthritis (usually in the ankles), and/or erythema nodosum. Erythema nodosum is a rash of red or reddish-purple bumps on your ankles and shins. The rash may be warm and tender to the touch.

Sarcoidosis is somewhat more common in women than in men. The disease usually develops between the ages of 20 and 50.

People who have certain jobs also may be at higher risk for sarcoidosis. Examples include:

  • Health care workers
  • Elementary and secondary school teachers
  • People whose jobs expose them to agricultural dust, insecticides, pesticides, or mold
  • Suppliers of building materials, hardware, or gardening materials
  • Firefighters

People who have a family history of sarcoidosis also are at higher risk for the disease.

What Are the Signs and Symptoms of Sarcoidosis?

Many people who have sarcoidosis have no symptoms or mild symptoms. Often, the disease is found during a chest x ray done for another reason (for example, to diagnose pneumonia).

The signs and symptoms of sarcoidosis vary depending on which organs are affected. Signs and symptoms also may vary depending on your gender, age, and ethnic background. (For more information, see “Who Is At Risk for Sarcoidosis?”)

Common Signs and Symptoms

In both adults and children, the disease most often affects the lungs. If granulomas (inflamed lumps) form in your lungs, you may wheeze, cough, feel short of breath, or have chest pain. Or, you may have no symptoms at all.

Some people who have sarcoidosis feel very fatigued (tired), uneasy, or depressed. Night sweats and weight loss are common symptoms of the disease.

Common signs and symptoms in children are fatigue, loss of appetite, weight loss, bone and joint pain, and anemia. Children who are younger than 4 years old may have a distinct form of sarcoidosis. It may cause enlarged lymph nodes in the chest (which can be seen on a chest x ray), skin lesions, and eye swelling or redness.

Other Signs and Symptoms

Sarcoidosis may affect your lymph nodes. The disease can cause enlarged lymph nodes that feel tender. Sarcoidosis usually affects the lymph nodes in your neck and chest. However, the disease also may affect the lymph nodes under your chin, in your armpits, or in your groin.

Sarcoidosis can cause lumps, ulcers, or areas of discolored skin. They may itch, but they don’t hurt. These signs tend to appear on your back, arms, legs, and scalp. Sometimes they appear near your nose or eyes. These signs usually last a long time.

Sarcoidosis may cause a more serious skin condition called lupus pernio. Disfiguring skin sores may affect your nose, nasal passages, cheeks, ears, eyelids, and fingers. These sores tend to be ongoing. They can return after treatment is over.

Sarcoidosis also can cause eye problems. If you have sarcoidosis, it’s important to have an annual eye exam. If you have changes in your vision and can’t see as clearly or can’t see color, call 9–1–1 or have someone drive you to the emergency room.

You should call your doctor if you have any new eye symptoms, such as burning, itching, tearing, pain, or sensitivity to light.

Signs and symptoms of sarcoidosis also may include an enlarged liver, spleen, or salivary glands.

Although less common, sarcoidosis can affect the heart and brain. This can cause a number of symptoms, such as abnormal heartbeats, shortness of breath, headaches, and vision problems. If sarcoidosis affects the heart or brain, serious complications can occur.

Lofgren’s Syndrome

Lofgren’s syndrome is a classic set of signs and symptoms that appear in some people when they first develop sarcoidosis. Signs and symptoms may include:

  • Fever. This symptom only occurs in some people.
  • Enlarged lymph nodes (which can be seen on a chest x ray).
  • Arthritis, usually in the ankles. This symptom is more common in men.
  • Erythema nodosum. This is a rash of red or reddish-purple bumps on your ankles and shins. The rash may be warm and tender to the touch. This symptom is more common in women.

Sarcoidosis Signs and Symptoms

The illustration shows the major signs and symptoms of sarcoidosis (as described in this section) and the organs involved.

The illustration shows the major signs and symptoms of sarcoidosis and the organs involved.

How Is Sarcoidosis Diagnosed?

Your doctor will diagnose sarcoidosis based on your medical history, a physical exam, and the results from tests. He or she will look for granulomas (inflamed lumps) in your organs. Your doctor also will try to rule out other causes of your symptoms.

Medical History

Your doctor may ask you detailed questions about your medical history. For example, he or she may ask whether you have a family history of sarcoidosis. Your doctor also may ask whether you’ve had any jobs that may have raised your risk for the disease.

Your doctor also may ask whether you’ve ever been exposed to inhaled beryllium metal. This type of metal is used to make aircrafts and weapons. Your doctor also may want to know whether you’ve had contact with organic dust from birds or hay.

Exposure to these substances can cause inflamed lumps in your lungs that look like the granulomas from sarcoidosis. However, these lumps are signs of other conditions.

Physical Exam

Your doctor will examine you for signs and symptoms of sarcoidosis. Signs and symptoms may include red bumps on your skin; swollen lymph nodes; an enlarged liver, spleen, or salivary glands; or redness in your eyes. He or she will check for other causes of your symptoms.

Your doctor also may listen to your lungs and heart. Abnormal breathing and heartbeat sounds may be a sign that sarcoidosis is affecting your lungs or heart.

Diagnostic Tests

You may have tests to confirm a diagnosis and to find out how the disease is affecting you. Tests include chest x ray, lung function tests, biopsy, and other tests to assess organ damage.

Chest X Ray

A chest x ray is a painless test that creates pictures of the structures inside your chest, such as your heart and lungs. The test may show granulomas or enlarged lymph nodes in your chest. About 95 percent of people who have sarcoidosis have an abnormal chest x ray.

For more information about chest x rays, go to the Diseases and Conditions Index (DCI) Chest X Ray article.

Lung Function Tests

Lung function tests measure the size of your lungs, how much air you can breathe in and out, how fast you can breathe air out, and how well your lungs deliver oxygen to your blood. These tests may be used to find out whether sarcoidosis is affecting your lungs.

For more information about lung function tests, go to the DCI Lung Function Tests article.

Biopsy

Your doctor may do a biopsy to confirm a diagnosis or rule out other causes of your symptoms. A biopsy involves taking a small sample of tissue from one of your affected organs.

Usually, doctors try to biopsy the organs that are easiest to access. Examples include the skin, tear glands, or the lymph nodes that are just under the skin.

If this isn’t possible, your doctor may use a positron emission tomography (PET) scan to pinpoint areas for biopsy. For this test, a small amount of a radioactive substance is injected into a vein, usually in your arm.

The substance, which releases energy, travels through the blood and collects in organs or tissues. Special cameras detect the energy and convert it into three-dimensional pictures.

If lung function tests or a chest x ray shows signs of sarcoidosis in your lungs, your doctor may do a bronchoscopy (bron-KOS-ko-pee) to get a small sample of lung tissue.

During this procedure, a thin, flexible tube is passed through your nose (or sometimes your mouth), down your throat, and into the airways to reach your lung tissue. (For more information, see “What To Expect During Bronchoscopy.”)

Other Tests To Assess Organ Damage

You also may have other tests to assess organ damage and find out whether you need treatment. For example, your doctor may recommend blood tests and/or an EKG (electrocardiogram).

Everyone who is diagnosed with sarcoidosis should see an ophthalmologist (eye specialist) for eye tests, even if they don’t have eye symptoms. This is important because eye damage can occur without symptoms.

How Is Sarcoidosis Treated?

Not everyone who has sarcoidosis needs treatment. In some cases, the disease goes away on its own. Whether you need treatment and what type of treatment you need depend on your signs and symptoms, which organs are affected, and whether those organs are working well.

If the disease affects certain organs, such as your eyes, heart, or brain, you’ll need treatment even if you don’t have any symptoms.

In either case-whether you have symptoms or not-you should see your doctor for ongoing care. He or she will want to check to make sure that the disease isn’t damaging your organs. For example, you may need lung function tests to make sure that your lungs continue to work well.

If the disease isn’t worsening, your doctor may watch you closely to see whether the disease goes away on its own. If the disease does start to get worse, your doctor can prescribe treatment.

The goals of treatment are to:

  • Relieve symptoms
  • Improve organ function
  • Control inflammation and reduce the size of granulomas (inflamed lumps)
  • Prevent pulmonary fibrosis (lung scarring) if your lungs are affected

Your doctor may prescribe topical treatments and/or medicines to treat the disease.

Medicines

Prednisone

Prednisone, a type of steroid, is the main treatment for sarcoidosis. This medicine reduces inflammation. In most people, prednisone relieves symptoms within a couple of months.

Although most people need to take prednisone for 12 months or longer, your doctor may lower the dose within a few months after you start the medicine.

Long-term use of prednisone, especially at high doses, can cause serious side effects. Work with your doctor to decide whether the benefits of this medicine outweigh the risks. If your doctor prescribes this treatment, he or she will find the lowest dose that controls your disease.

When you stop taking prednisone, you should cut back slowly (as your doctor advises). This will help prevent flareups of sarcoidosis. Cutting back slowly also allows your body to adjust to not having the medicine.

If a relapse or flareup occurs after you stop taking prednisone, you may need a second round of treatment. If you remain stable for more than 1 year after stopping this treatment, the risk of relapse is low.

Other Medicines

Other medicines, besides prednisone, also are used to treat sarcoidosis. Examples include:

  • Hydroxychloroquine. This medicine works best for treating sarcoidosis that affects the skin or brain. Your doctor also may prescribe this medicine if you have a high level of calcium in your blood due to sarcoidosis.
  • Methotrexate. This medicine works best for treating sarcoidosis that affects your lungs, eyes, skin, or joints.

Your doctor may prescribe these medicines if your sarcoidosis worsens while you’re taking prednisone or if you can’t handle prednisone’s side effects.

If you have Lofgren’s syndrome with pain or fever, your doctor may prescribe nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen.

If you’re wheezing and coughing, you may need inhaled medicine to help open your airways. You take inhaled medicine using an inhaler. This device allows the medicine to go right to your lungs.

Ongoing Research

Researchers continue to look for new and better treatments for sarcoidosis. They’re currently studying treatments aimed at the immune system. Researchers also are studying antibiotics as a possible treatment for sarcoidosis that affects the skin.

Living With Sarcoidosis

Sarcoidosis has no cure. However, you can take steps to manage the disease. Get ongoing care and follow a healthy lifestyle. Talk to your doctor if you’re pregnant or planning a pregnancy.

Ongoing Care

Getting ongoing care is important, even if you don’t take medicine for your sarcoidosis. New symptoms can occur at any time. Also, the disease can slowly worsen without your noticing.

How often you need to see your doctor will depend on how severe your symptoms are, which organs are affected, what treatments you’re using, and whether you have any side effects from treatments. Even if you don’t have symptoms, you should see your doctor for ongoing care.

Your doctor may recommend routine tests, such as lung function tests and eye exams. He or she will want to check to make sure that the disease isn’t damaging your organs.

Discuss with your doctor how often you need to have followup visits. You may have some followup visits with your primary care doctor and others with one or more specialists.

Lifestyle Changes

Making lifestyle changes can help you manage your health. For example, follow a healthy diet and be as physically active as you can. A healthy diet includes a variety of fruits, vegetables, and whole grains.

It also includes lean meats, poultry, fish, beans, and fat-free or low-fat milk or milk products. A healthy diet is low in saturated fat, trans fat, cholesterol, sodium (salt), and added sugar.

For more information on following a healthy diet, see the National Heart, Lung, and Blood Institute’s Aim for a Healthy Weight Web site, “Your Guide to a Healthy Heart,” and “Your Guide to Lowering Your Blood Pressure With DASH.” All of these resources include general information about healthy eating.

If you smoke, quit. Talk to your doctor about program and products that can help you quit. Also, try to avoid other lung irritants, such as dust, chemicals, and secondhand smoke.

Emotional Issues

Living with a chronic disease may cause fear, anxiety, depression, and stress. It’s important to talk about how you feel with your health care team. Talking to a professional counselor also can help. If you’re feeling very depressed, your health care team or counselor may prescribe medicines to make you feel better.

Joining a patient support group may help you adjust to living with sarcoidosis. You can see how other people who have the disease have coped with it. Talk to your doctor about local support groups or check with an area medical center.

Support from family and friends also can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.

Pregnancy

Many women who have sarcoidosis give birth to healthy babies. Women who have severe sarcoidosis, especially if they’re older, may have trouble becoming pregnant. In some cases, sarcoidosis may get worse after the baby is delivered.

If you have sarcoidosis and are pregnant or planning a pregnancy, talk to your doctor about the risks. Also, if you become pregnant, it’s important to get good prenatal care and regular sarcoidosis checkups during and after pregnancy.

Some sarcoidosis medicines are considered safe to use during pregnancy; others are not recommended.

Key Points

  • Sarcoidosis is a disease of unknown cause that leads to inflammation. It can affect various organs in the body.
  • Sarcoidosis is more likely to occur in some organs than in others. The disease usually starts in the lungs, skin, and/or lymph nodes (especially the lymph nodes in your chest). The disease also often affects the eyes and the liver.
  • In people who have sarcoidosis, immune system cells cause inflammation and cluster to form lumps called granulomas.
  • If many granulomas form in an organ, they can affect how the organ works. This can cause signs and symptoms. Signs and symptoms vary depending on which organs are affected. Many people who have sarcoidosis have no symptoms or mild symptoms.
  • Some researchers think that sarcoidosis develops when your immune system responds to a trigger, such as bacteria, viruses, dust, or chemicals. Genetics also may play a role in sarcoidosis.
  • Sarcoidosis affects people of all ages and races. In the United States, the disease affects African Americans somewhat more often and more severely than Whites. The disease also is slightly more common in women than in men. It usually develops between the ages of 20 and 50.
  • In both adults and children, the disease most often affects the lungs. If granulomas form in your lungs, you may wheeze, cough, feel short of breath, or have chest pain. Some people who have sarcoidosis feel very fatigued (tired), uneasy, or depressed. Night sweats and weight loss are common symptoms of the disease.
  • Lofgren’s syndrome is a classic set of signs and symptoms that appear in some people when they first develop sarcoidosis. Signs and symptoms may include fever, enlarged lymph nodes, arthritis, and erythema nodosum (a rash of red or reddish-purple bumps on your ankles).
  • Your doctor will diagnose sarcoidosis based on your medical history, a physical exam, and the results from tests. He or she will look for granulomas (inflamed lumps) in your organs. Your doctor also will try to rule out other causes of your symptoms.
  • Whether you need treatment and what type of treatment you need depend on your signs and symptoms, which organs are affected, and whether those organs are working well.
  • Your doctor may prescribe topical treatments and/or medicines to treat the disease. Not everyone who has sarcoidosis needs treatment. In some cases, the disease goes away on its own.
  • If the disease affects certain organs, such as your eyes, heart, or brain, you may need treatment even if you don’t have any symptoms.
  • Sarcoidosis has no cure. However, you can take steps to manage the disease. Get ongoing care and follow a healthy lifestyle. Talk to your doctor if you’re pregnant or planning a pregnancy.
  • Getting ongoing care is important, even if you don’t take medicine for your sarcoidosis. New symptoms can occur at any time. Also, your condition can slowly worsen without your noticing.
  • The outcome of sarcoidosis varies. Many people recover from the disease with few or no long-term problems.
  • Rarely, sarcoidosis can be fatal. Death usually is the result of complications with the lungs, heart, or brain. Poor outcomes are more likely in people who have advanced disease and show little improvement from treatment.

What do you do?

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I am interested in what other people with chronic diseases do in regards to changes they have made in their lives since their diagnosis. Please, if you have a chronic disease, comment on this post and share your experiences with everyone here. To help get you started, I have a few questions below. Pick any or none and comment below. Thanks! I cannot wait to see what you write!

Do you find inventive ways around your disease? If so, what do you do?

 

Have you had to give up certain things or do you still accomodate them albeit in different ways? Have you given things up completely? Do you miss these things?

What things have made you stronger?

Do you feel like life is more enriched since your diagnosis? In what way?

Do you feel cheated? Are you angry?

Do you get support from your family? Friends?

What are your blessings?

Chronic Pain and Police Mentality

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I am posting these articles to show why many doctors feel unable to adequately treat chronic pain with medications that have been shown to not only work for those with chronic pain, but can actually lead to a much improved quality of life.

Please read these articles and form your own opinion. I welcome comments as well.

“The Police State of Medicine”

// //
Introduction  —

First, I would like to thank the Drug Policy Foundation for the opportunity to speak to you today.  I understand that the rights of patients to effective treatment and the impact of current drug policy on the doctor-patient relationship are very much on your minds, as they are on mine.  I offer my story as a case study of regulatory abuse, as we try to fashion an adequate political and legal response to what I think of as “The Police State of Medicine.”

I will begin with a review of the legal events in my case.  I will then tell you about my patients and the impact of the legal action against me on them.  Finally, I would like to address two related questions: 

How does the police-state of medicine affect medical care?


and. . .
What can we do about it?


What Happened to Me?

In May of 1996, my license to practice medicine was suspended without a prior hearing by the Commonwealth of Virginia after the deaths of two of my patients were incorrectly attributed to my treatment.  I was charged with having prescribed excessive doses of opioid analgesics in the treatment of 30 patients who, it was acknowledged by the Board of Medicine, had conditions causing intractable pain.  The charges were brought without any apparent reflection by the Board on the applicability of Virginia’s Intractable Pain Act, upon which I was relying for legal protection.

The hearing might well be characterized as a Kafkaesque inquisition.  This was not anything close to an open-minded search for the truth in which legal adversaries present evidence before an impartial finder-of- fact.  This Board thought it knew from the outset what constituted proper pain management, and it thought it knew that the high doses of medication I prescribed to many of my patients were illegitimate and without clinical rationale.  The number of pills I prescribed was all the evidence the Board or its prosecutors thought they needed.  They had not even bothered to subpoena my medical records!

When we pointed out that, under the Virginia Intractable Pain Act, dose alone was an insufficient legal basis for disciplinary action, rather than dismiss the charges, the hearing was turned into a fishing expedition for evidence with which to smear my name and to provide a rationale for the harm they had already caused me and my patients by the summary suspension.  The prosecuting attorney sponsored testimony to the effect that I was taking money under the table for prescriptions — testimony which was subsequently shown to be pure fabrication — without disclosing his witness’ prior felony conviction for fraud.  He also presented testimony from an addiction specialist, who, it turned out, had himself been disciplined over a ten year period by this very Board.  He had been an anesthesiologist who was addicted to Fentanyl, a strong opioid used in anesthesia, which he stole from his patients — leaving them to buck in pain on the operating table.

My experts — all pain specialists of international repute (one of whom, Dr. C. Stratton Hill, is being honored at this conference) — were harassed by cross-examining Board members.  My patients, many of whom had traveled from distant states, were ignored, ridiculed, insulted, and ultimately condemned to pain and misery.

After this caricature of a hearing, my license was revoked.  Although the revocation was stayed and my license was restored after three months, my authority to prescribe the controlled substances necessary to treat my patients was withheld.  The Virginia proceedings set in motion a cascade of legal action against me.  The authorities in the District of Columbia, where I was actually in practice, suspended my license.  This provided the DEA a basis to revoke my registration — although ultimately they agreed to transfer my registration to my Virginia address with restrictions paralleling those imposed by the Virginia Board.

After an informal hearing in August of 1997, the Virginia Board restored my ability to prescribe pain medicine and accepted a protocol for treating pain patients that was essentially the same as I had been using prior to my suspension.  By doing so, the Board appears to have accepted the legitimacy of the therapeutic principle that calls for adjustment of medications according to patient response without limit as to dose or combination.  The Virginia Board’s action remains, at best, a symbolic gesture without practical consequence, however, unless and until the DEA restores my registration and the Board has an opportunity to demonstrate its good faith.

An appeal from the original Board Order of August 1996, in which the Court is called upon to interpret the extent, if any, of the safe-harbor protection afforded by the Virginia Intractable Pain Act, was heard in August of this year (1997).  The Court has not yet issued its opinion.  Nor has the DEA responded to the application I submitted over four months ago for full restoration of my prescribing privileges.  It’s not their pain.

Only participants can have any idea of the exorbitant personal and professional costs such legal proceedings exact.  But this was nothing, when compared to the impact on my patients.

What Happened to My Patients?

At the time of the Virginia Board’s suspension in May of 1996, I had over 200 patients with intractable pain from all over the United States. Some of their stories are gripping:

A young woman whose daily headaches were so bad that she had the nerves to the back of her head cut, only to find that after a brief respite, her pain came back worse than before.

A gentleman, now in his 50s whose legs had to be amputated when he was 18 years old.  They had been frozen when he was trapped in his car after an accident in 30-below weather.  He subsequently had the lower portion of his torso removed.  With the benefit of pain medicine, he was able to work and support himself.

A physician who had such severe reflex sympathetic dystrophy that his left arm became gangrenous and had to be amputated.

A woman in her thirties whose leg had been almost completely severed at the thigh in a motorcycle accident.  The orthopedist who reattached her leg also treated her pain with opioids.  But after he retired, noone would continue her treatment.

There were over 200 of these patients with crippling pain from failed backs, arthritis, multiple sclerosis, interstitial cystitis, arachnoiditis, RSD, TMJ, trigeminal neuralgia, and phantom limbs. . . the list goes on and on and on.  Many of them had come to me after years of unsuccessful attempts to obtain relief from a multitude of procedures, doctors, and pain clinics.  They were treated like addicts and criminals.

They were stigmatized, insulted, neglected and abandoned.  Betrayed by the whole medical profession with the refrain, “I would like to help you, but I can’t.  I don’t want to lose my license.”  But who can blame the doctors, who are themselves the victims of the thuggish drug-control police and the heartless and mindless bureaucrats who serve on boards of medicine.

When my patients came to see me, they were terrified that I too would reject them, or subject them to more tests, more procedures, more expense and delay.  But my approach was different.  I asked them what had worked in the past, and that was my starting point.  I let their response to medication guide my treatment.  If one medication didn’t work, or made them sick, we — the patient and I — tried another.  If a medication became less effective, we increased the dose.  Sooner or later, we found what worked best for each patient.

The response to pain relief was dramatic.  People who hadn’t worked in years went back to work.  People who could barely get out of bed began to move, even to dance.  Some no longer needed crutches or a cane.  Almost everyone reported that their lives were better.  Many said that I had given them their lives back.

When word went out that my license had been suspended, there was panic as patients contemplated what it would mean for the pain to return.  Lives that had been rebuilt on the basis of pain control had lost their foundations.  After I lost my license, the fear was palpable:  pharmacists afraid to fill my prescriptions, doctors afraid to take my patients, and patients desperate for continuity and certainty.  Added to the stigma of taking morphine, methadone, or Dilaudid, was the stigma of being one of “Dr. Hurwitz’s” patients.

There were a few happy stories.  A few physicians who had known my patients before they came to me and saw their improvement while under my care were willing to continue the treatment.  Pain specialists at some of the academic centers and a few brave doctors in private practice were willing to take my patients.  Some of my patients, those who had saved a reserve supply, were able to obtain a modicum of pain relief and avoid the symptoms of abrupt withdrawal.

Some stories were not so happy.  A few patients went through horrible withdrawals — a number who availed themselves of medical help were admitted to psych units and detoxed cold turkey.  Some found doctors who were willing to treat them, but were unwilling to continue what had been successful medication regimens.  Some were exploited by doctors who imposed expensive and risky procedures as a condition for receiving pain medication.  And some just gave up, exhausted by insurmountable obstacles.

There were two suicides directly attributable to the prospect of inadequate pain control.

How Does The Police-State of Medicine Affect Medical Care?

The quasi-criminal liability imposed on physicians distorts clinical information and medical judgment, impedes the development of clinical expertise, undermines the ethical commitments necessary to medical practice, and leads to the abandonment, wasted lives, and deaths of patients with intractable pain.  Holding physicians liable for the misbehavior or dishonesty of their patients turns physicians into policemen and is, in principle, incompatible with effective medical care.

In what other context do we sit in judgment of a patient’s moral worth to determine his eligibility for treatment?  Is a former addict with AIDS less entitled to medical care than the victim of a contaminated transfusion?  Or less entitled to pain relief with opioid medications?

To me, the unequivocal answer is no.  We are not society’s policemen, nor should we be.  I am not arguing that we should be indifferent to the use to which our prescriptions are put.  I am arguing that patients deserve the benefit of the doubt, that a Draconian response to the occasional, but inevitable physician error in providing medication to the dishonest patient who may be misusing or diverting medication has the inevitable consequence of denying pain relief and perhaps condemning to death the honest one.

Effective medical care requires trust in both directions.  A patient must trust that his physician is acting in the patient’s medical interest.  But how is this possible when the physician’s career is threatened by doing so?  A physician must trust that his patient is reporting his circumstances and symptoms accurately.  How is this possible when the patient is afraid that the truth will look suspicious, and that merely looking suspicious will prompt abandonment?

Under current regulatory policies, distrust governs the treatment of pain and subverts the usual clinical calculus of risk and benefit.  Patients are subjected to a modern version of trial by ordeal, where their credibility as patients is measured by the pain and indignity they are willing to endure and the expense they are willing to incur.  And physicians who are unwilling to impose these indignities as a condition for pain treatment are punished with the destruction of career, reputation, and livelihood.

In the end, the only important clinical question should be:  What is best for the patient?  As physicians, we treat individuals for the simple reason that they are fellow human beings, and our treatment must respect their humanity.  Respect requires that patients be afforded the dignity of choice — the freedom to choose or refuse treatments based on their calculus of risk and benefit and cost.  The current regulatory regime effectively denies most patients the dignity and respect that simple humanity requires.

What Can We Do About It?

The stakes in this battle are too great to leave its outcome to the valiant efforts of the dedicated few.  We need reinforcements in the form of legal help, publicity, and financial support to help make boards of medicine and the DEA legally and politically accountable for the misery they engender.  Intractable pain acts are not enough.  And if boards of medicine were, as a practical matter, legally, ethically and politically accountable, such statutes would not be necessary.

Our strategy should be to raise the cost to the regulators of their regulatory tyranny and to lower the cost to physicians, pharmacists, and patients of defending their rights.  We need to destroy the public’s naive presumption of the regulators disinterested good faith, to debunk the myth that medicine is being regulated in the public interest, and to reveal the abuse of power for what it is.  Only then will we empower physicians to help their patients, and patients to control their pain.

*   Dr. William Hurwitz, MD, is 51-years old and a graduate of Columbia College (1966, BA), Stanford Medical School (1971, MD) and George Mason University School of Law (1996, JD).  Married with two children, Dr. Hurwitz resides and now practices medicine in McLean, Virginia — prior to the revocation of his medical licenses, he practiced in Washington, DC.  Dr. Hurwitz and this issue have been the focus of in-depth reporting by CBS’s “60 Minutes,” “US News & World Report” and PBS’s John McLaughlin.

Remarks By Dr. William Hurwitz,* MD
BEFORE

October 18, 1997
NEW ORLEANS, LA

The Drug Policy Foundation*

Copyright © 1997 by Dr. William Hurwitz, MD

 

Deadly Morals

article By Katherine Eban Finkelstein

Copyright Playboy Magazine, August, 1997

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THE DEA IS BUSTING DOCTORS FOR PRESCRIBING DRUGS-AND PATIENTS ARE DYING IN PAINDONALD DEWBERRY, 44, a retired aircraft mechanic, went to Dr. John McFadden several years ago after two failed surgeries for degenerative disk disease. 7he pain in his neck was crippling, and even moving his eyes triggered it. Dr. McFadden, who is medical director of the Tupelo Pain Clinic in Tupelo, Mississippi, prescribed Dewberry narcotic painkillers known as opioids, which are highly effective and rarely addictive when taken to relieve pain.Unfortunately for McFadden, he was under surveillance. Federal and state narcotics investigators first went to his red-brick clinic in 1987 on a tip from the Mississippi State Board of Pharmacy that he was overprescribing painkillers. They sifted through his inventory logs for evidence that narcotic medications had been diverted to the street for black-market resale. McFadden claims that only minor record-keeping errors were found. Yet because McFadden specialized in pain treatment (and therefore had prescribed narcotics such as Vicodin and Tylenol #3), he was subject to continuing suspicion. Over the next nine years, agents from the Mississippi State Board of Medical Licensure periodically investigated his prescribing habits.

A new front had been opened in the drug war, and patients in pain were potential enemies. Even though McFadden, the only pain specialist in northern Mississippi, administered legal medications of great benefit, his prescribing of narcotics targeted him as a suspect.

In March 1996 a state medical board investigator arrived at his clinic with a search warrant. “We had been expecting him. We knew he had to do his job, so we were friendly and said, ‘You can look at any-thing you want,”‘ McFadden recalls. The agent seized the medical charts of 36 patients. Several months later McFadden was notified that the medical board had charged him with 11 counts of violating the Mississippi Medical Practice Act, including unprofessional conduct “likely to harm the public.”

After two days of administrative hearings and 30 minutes of deliberation, the medical board-whose members are appointed by the governor-suspended McFadden’s medical license and prohibited him from prescribing a variety of controlled substances on an outpatient basis. McFadden’s censure has had a chilling effect in Mississippi medical circles. To avoid similar repercussions or scrutiny, other area doctors have virtually stopped prescribing narcotics. One doctor in Tupelo posted a notice in his waiting room: DO NOT ASK ME TO REFILL PAIN MEDICATIONS. In a doctor’s office 40 miles away in Corinth, a sign read DON’T ASK FOR OPIOIDS.

McFadden’s patients, meanwhile, were left in pain. When Dewberry returned to his longtime family practitioner in nearby Oxford and asked for a prescription, the doctor chewed him out. “‘You’re just an addict,”‘ Dewberry recalls him saying. He has since stopped taking medication, and the pain keeps him in bed: “I’m in this haze of fighting pain. I’m trying to raise two teenagers, and I have a mortgage on the house. But if I said, ‘Heck, if it all falls to pieces . . .’ then it does.”

By almost any measure, America has lost its war on illegal drugs. Cocaine and heroin still cross the nation’s borders. “Cat,” or methcathinone, can be purchased in any city, despite endless law enforcement efforts to buy and bust. Meanwhile, the real threat from illegal drugs has fed America’s opiophobia, an irrational fear of narcotic pain relief. Needing a winnable war, the government has cracked down in doctors’ offices. Across the country, state agents, allied with the DEA, have staked out pain clinics under the assumption that wherever narcotics are prescribed, diversion of the drugs will soon follow. In pursuing this theory, the government has criminalized an entire class of patients and scared doctors into abandoning them.

As a result, pain is grievously undertreated. According to the National Chronic Pain Outreach Association, an estimated 34 million patients suffer chronic pain and lose 50 million workdays a year. Seven million of these patients cannot relieve their pain without opioids, but there are only approximately 4000 doctors in the country willing to prescribe them. A recent New England Journal of Medicine editorial noted that 56 percent of cancer outpatients and 82 percent of AIDS outpatients received inadequate pain treatment. Fifty percent of hospitalized patients with a range of illnesses also received inadequate pain treatment.

Our drug war has overshadowed our pain crisis because the former is fought by politicians, while the latter is lived by patients who are often confined to bed. In the absence of an effective pain lobby, politicians have been able to whip the public into an opiophobic frenzy. “All you have to do is scream about the drug hysteria, then everyone tucks his tail and runs,” says Dr. Stratton Hill, a Houston pain specialist. “No politician wants the charge that he’s soft on drugs.” Late last year the Clinton administration challenged referenda in Arizona and California that would legalize the medical use of marijuana for easing the pain and nausea that are related to cancer and its treatment. This past March the president emerged from knee surgery declaring that he would not medicate his pain with narcotics.

While doctors may shrug off such proclamations, they cannot afford to ignore the investigative machinery that opiophobia has built. “We have established a bureaucracy to catch doctors making errors,” says a leading researcher in pain treatment. “As a result, fear is endemic among physicians.”

In 1984 Congress handed the DENS Office of Diversion Control discretionary power to revoke a doctor’s registration to prescribe medicine. (In order to write prescriptions, doctors must be registered with the DEA.) The 1984 legislation enabled the government to yank this registration if a doctor commits “such acts as would render his registration . . . inconsistent with the public interest.” This phrase, buried in the fine print of the Dangerous Drug Diversion Control Act, significantly expanded the ODC’s latitude. Before 1984, the agency could revoke a doctor’s registration for only three reasons: If he had falsified a prescription, was convicted of a felony relating to controlled substances or had his state medical license revoked, denied or suspended.

With the passage of the act, the rules changed overnight-from black-and-white to gray. Enforcers could pronounce guilt and revoke a registration simply by declaring that the public interest had been threatened. Suddenly, prescribing that was determined to be against the “public interest” was being used as prima facie evidence of diversion. The government had effectively criminalized narcotic pain treatment and had begun to practice medicine.

Since its creation in 1973, the ODC has had a dual function. It was charged with ensuring the availability of pharmaceutical drugs for legitimate needs and preventing their diversion for illegitimate sale and use. But the 1984 drug bill changed everything. Despite limited data on the origins or amount of diversion, the agency targeted doctors and patients, performing search and-seizure operations in the offices of baffled clinicians. The peremptory justice was supported by Orwellian logic:

Patients at pain clinics use narcotics.

Narcotics can be addictive.

Therefore, pain patients are addicts.

This new system encouraged doctors to suspect the motives of their patients. “As doctors, we believe in people, but the government expects each of us to be an FBI unit. We’re supposed to trust no one,” explains Dr. Frank McNiel, a family practitioner in Knoxville, Tennessee.

In deciding who to bust, investigators rely heavily on medication categories that were established in 1970 under the Controlled Substances Act. The DEA groups medications into five different “Schedules,” depending on their potential for abuse. Schedule V contains some prescription drugs as well as over-the-counter cough medicines, which are rarely abused. Schedule IV includes benzodiazepines such as Valium. Schedule III contains anabolic steroids, some barbiturates and blends of aspirin and codeine. Schedule I includes heroin, LSD and marijuana, which have no medical use, according to the feds.

Overwhelmingly, the 1984 provision led agents to focus on Schedule 11. The painkillers here, including morphine and Dilaudid, have a high street value. Looking for a way to combat diversion, agents relied on the all-purpose “public interest” dictum. They used it as a preventive tool, to bust law-abiding doctors prescribing medication that might be diverted down the road. On both the state and federal levels, the distinction between enforcement and prevention collapsed, as did the distinction between criminal behavior and the treatment of pain. Once Schedule II drugs were involved, the DEA decided to shoot first and ask questions later.

Federal and state arsenals are now bristling with weaponry. The DEA performs long-range computer surveillance with the Automated Reports and Consolidated Orders System. This database logs every transaction between manufacturers and distributors of controlled substances. If a large quantity of barbiturates, for example, were distributed in a certain city, it could mean that an organized group had diverted the medication. Law enforcement authorities would launch an investigation.

States use their own monitoring apparatuses to track the prescriptions of individual doctors and their patients’ habits. Some states require doctors to report even their terminal cancer patients as addicts if they are prescribed opioids for a certain period of time. In eight states, including California and New York, doctors who want to prescribe from Schedule II must order registered prescription forms that have multiple copies: The doctor retains one, the pharmacist keeps one and the third copy is sent to state health or narcotics-control agencies. Studies show that doctors in these states have decreased the amounts of Schedule II drugs they prescribe by 40 percent to 60 percent. Possibly, some of the drugs had been diverted and the crackdown was actually successful. But studies also have shown that doctors in these states increased their prescribing of less-regulated painkillers by almost the same percentages. These alternative drugs are often less effective in treating pain and can also be more dangerous to patients than are Schedule II drugs.

The scrutiny has led doctors to ration pain medicine and ignore pain — necessary restraint in a world of diversion, enforcers would have us believe. “Even if you treat a patient with a terminal malignancy, it’s irresponsible to write a prescription for 500 Dilaudid tablets,” says Dr. James Winn, executive vice president of the Federation of State Medical Boards. “If the patient dies three days later, in a legitimate family the rest should be flushed down the commode. But sometimes a family member picks them up. We have a major drug problem in this country, and a lot of it comes from doctors.”

The DEA provides no detailed record of the amount of diverted prescription drugs it recovers each year. The agency also lacks comprehensive data on the origin of the medication it seizes. Thus, despite Dr. Winn’s assessment, there is little evidence to suggest that the narcotics which originate in doctors’ offices are the same drugs which wind up on the street. In fact, DEA officials concede that the majority of black-market narcotics originate from crime rings in foreign countries, where the drugs are manufactured illegally.

In February ODC director Gene Haislip retired after 17 years, leaving behind an agency known for its intimidation tactics. Haislip maintains that legitimate prescribing has not been deterred at all by his policies. “I don’t believe doctors would not prescribe because of there being a government report any more than they would not make money because they have to report it on their income tax,” he claimed confidently in a speech that outraged doctors.

Despite this shaky analogy, the IRS doesn’t destroy your livelihood, it simply takes a portion of it. A DEA fine, or even a protracted state medical board investigation, can threaten your medical practice, your income and the wellbeing of your patients. A state board ruling nearly ruined Dr. McNiel’s life. A family practitioner who ran an outpatient clinic in Mosheim, Tennessee, McNiel vividly remembers the day he was first targeted. “In 1992 an investigator with a badge walked into my office and said I was under investigation. She had a list of patients and said she wanted to look at charts. She dug around for a few days, then disappeared.” As McNiel puts it, her visit “encased the office in ice.”

Working for 15 years as a missionary doctor in Honduras and Nicaragua, McNiel had witnessed all kinds of injustices. But nothing could have prepared him for what happened next. More than a year later, he received an official envelope that contained a long list of charges: “The only thing it didn’t include was rape because they didn’t think of it. They make you out to be the scum of the earth. This is devastating to a person’s self-esteem.” The medical board brought charges against McNiel of nontherapeutic prescribing in the cases of ten patients, in addition to mentioning, without any explanation, “other cases too numerous to count.” The board, seemingly making no effort to conceal its arbitrary methods, also proposed more than $20,000 in fines.

National data suggest that such administrative intimidation is widespread. In 1994 state medical boards took action against 434 physicians for prescribing in violation of state medical practice acts, according to the Federation of State Medical Boards. However, the DEA, which often works with state medical boards, pursued only six criminal cases against doctors in 1994, according to information obtained from a database of justice Department files. Of these, only one doctor, from Puerto Rico, was found guilty.

The data from 1995 are similar. State medical boards took 392 actions against doctors for prescription violations. Only 11 cases were pursued by the feds that year, but there were no criminal findings. Two of the cases were dismissed because of minimal federal interest. The picture is the same at the state level. Last year in New York, the Bureau of Controlled Substances adjudicated 36 cases against doctors. However, 14 were civil cases, 14 had no charges issued and there was a smattering of warnings. Only one case was criminal.

Though these numbers seem small, each doctor works in a close-knit community. The flash of a badge can send shock waves through a hospital, or a state, and indelibly change prescribing habits. Some doctors in New York still shudder when they think of Dr. Ronald Blum, former deputy director of the Kaplan Cancer Center at New York University. In 1987 two state drug agents with guns and badges arrived at Dr. Blum’s office. Though Blum was not arrested, the agents threatened to slap him with three record-keeping violations. Eighteen months later, he received a letter of warning and the investigation against him was dismissed. Nonetheless, Blum’s “case” was used to bolster the statistics on state drug crackdowns.

The DEA, for its part, is quick to point out that its drop-ins on doctors are not arrests. An agency spokesperson explains: “It is important for people to realize that just because the DEA initiates an action, that doesn’t mean there’s criminal activity.” Which is just the point.

A lawyer in Austin, Texas who has defended numerous doctors from overprescribing charges describes the agency’s numbers game: “The DEA agents show up like a blitz, unannounced, in their little black jackets. They’ll scare the you-know-what out of a doctor and get him to surrender his DEA registration. They get instant results for their own data, and they make a quick bunch of money for the government, a $25,000 fine. But the doctor is screwed, because he doesn’t have his DEA number and can’t reapply for a year. When he does, the medical board says, ‘You gave up your DEA number. You must have done something wrong.”‘ It is a rare doctor who, when threatened with these sorts of grave charges, will refuse to surrender his registration.

The Mississippi medical board that heard McFadden’s case makes it clear that it hails administrative citations as victories. “We are number one in the country for bringing the most disciplinary actions per 1000 physicians,” says Dr. Thomas Stevens, the board’s executive officer. “I’m not proposing that we’re the best in the world. But it might be a sign that we do a good job.” Zealotry aside, the board’s complaint counsel, Stan Ingram, contends that the hearings are fair. “The board members trying the case play no role in the investigation and have little knowledge of the facts prior to the hearing,” he explains. In fact, a board member who is McFadden’s neighbor was permitted to recuse himself; thus due process was protected.

Nonetheless, McFadden’s son-in-law, Sean Milner, a Jackson, Mississippi based attorney, was appalled by the blatant conflicts of interest that riddled the hearing. For example, a state investigator collected the evidence and Ingram prosecuted the case; both are on the board’s payroll. “It’s the kind of justice you see in third world countries,” Milner says. “The judges are the investigators. They hire the prosecutor. They sit as the jury, plus referee the match. How many cases do you think they lose?”The board did not demonstrate that patients had complained. It presented no evidence that McFadden had harmed patients. The board did enter evidence that McFadden kept incomplete records. On several occasions, for example, he prescribed from home when his patients had crises, then failed to enter those prescriptions into his office records. Yet the board’s medical expert, a neurosurgeon, never addressed record keeping. Instead, he debated one of McFadden’s diagnoses, then testified that in his opinion, McFadden had treated his patients in good faith.

“I don’t want to use the term witch hunt, but I don’t know how else to describe the Board of Medical Licensure,” says a pharmacist who used to fill McFadden’s prescriptions. McFadden has begun the arduous process of appealing the board’s ruling.

It is now probably easier for a drug addict to buy black-market prescriptions on a street corner than it is for Dewberry to obtain a legal prescription for Vicodin. Meanwhile, there is no evidence that this policy has slowed real diversion, according to Dr. James Cooper, associate director of the clinical services research division at the National Institute on Drug Abuse. “It’s misleading to say that diversion comes only from prescribing. The research data aren’t available. No one knows the nature and extent of diversion from doctors’ offices, thefts, forgeries and smuggling.”

On paper, the DEA supports the use of opioids to treat pain patients. Its 1990 Physician’s Manual states that narcotic analgesics have “a legitimate clinical use and the physician should not hesitate to prescribe, dispense or administer them when they are indicated for a legitimate medical purpose.” In reality, the agency’s crackdown has been so complete that obtaining legal pain medicine has become practically an underground activity. On August 10, 1996 the Virginia Board of Medicine revoked Dr. William Hurwitz’ license, claiming he had overprescribed opioids. Many of his 220 patients, who suffer intractable pain and came from around the country to see him, have been unable to find new doctors. Several patients are being tracked by DEA agents; they speak to one another through Web sites. Two committed suicide because of the prospect of untreated pain. One recorded a final videotape, saying that his inability to find pain relief led him to seek death.

Dr. Hurwitz, 51, who obtained a law degree after he was first investigated in 1991, believes the state shouldn’t interfere with a patient’s right to treatment: “It is important to assess patient reliability. But I refuse to hold a moral screen over eligibility for medical care.” Although some of his patients had prior addiction histories, he issued them prescriptions for clear medical needs. “I wanted to make sure that people were as functional and comfortable as possible,” he says. “I felt the sheer force of numbers would protect us, by illustrating the need for pain treatment.”

That illusion has been shattered. A dozen of his patients have contacted Dr. Jack Kevorkian in Detroit, who receives several hundred calls a week from patients suffering from intolerable pain. In April, Susan T., a registered nurse and a former Hurwitz patient, sent Dr. Kevorkian her final set of medical records.

Years ago, she had been vital and athletic. But searing pain in her legs and buttocks from a botched gynecological operation and a subsequent back injury left her unable to get out of bed. Her only relief came from Hurwitz, who had her up and walking with Percocet and morphine. Since his license was revoked, she has called more than 15 doctors. Most refused to treat her after she disclosed her connection to Hurwitz.

This experience led Susan to Kevorkian. She explains, “I’m pushing hard to get financial things in order, to set up a revocable trust and have my house cleaned out of extra stuff so my husband won’t have to do it.” Of course, she could take another patient’s pain medication. But that would be diversion. “It’s plain illegal and there’s a line,” says Susan. “Many things are worse than death. One of them is losing the last of your dignity.”

Patients who need narcotics are often given less-regulated alternatives that are far more dangerous. Doctors who fear scrutiny rely heavily on antiinflammatory drugs such as arthritis pills, which can cause internal bleeding, liver damage and ulcers. One study has shown that these alternative medications kill 17,000 pain patients a year. Comparatively, the death rate from narcotic painkillers is “vanishingly small,” says Dr. Brian Goldman, a University of Toronto researcher who has studied prescription drug diversion. “There is no gastrointestinal bleeding, or kidney or liver failure. An accidental death could be from respiratory failure, but pain triggers you to breathe.”

Despite these facts, says Dr. Goldman, “the underlying logic is that death is better than addiction. ‘Narcotics can addict you. The alternative drugs can kill you. Therefore, we should prescribe those.”‘

Doctors fear drug investigators and with reason. A 1987 DEA study showed that in states with a triplicate monitoring system, only 21 percent to 35 percent of physicians bothered to order the required forms. They simply chose never to prescribe drugs that created added scrutiny. As Michael Troyer, director of the National Chronic Pain Outreach Association, puts it, “Doctors do not want to be identified as treating pain patients for fear of being investigated.”

In 1994 the DEA tried once again to augment its weaponry against legal narcotics. The agency drafted legislation, the Controlled Substances Monitoring Act, that would have required physicians to use government-issued prescription forms for all controlled substances. The Department of Health and Human Services deftly quashed the plan, noting that the DEA had submitted no evidence that the scope of drug diversion required such “drastic action.” This defeat signaled a subtle ebb in public opiophobia.

Support for pain patients has been growing, partly fueled by outrage over regulatory excesses. Since 1989 ten states have passed intractable-pain treatment acts, supporting the medicinal use of narcotics for patients with severe pain. In Oregon, Republican state senator Bill Kennemer underwent a bitter personal experience that led him to sponsor what came to be known as the Compassionate Care Act. In 1990 his wife was diagnosed with terminal breast cancer, and she was in excruciating pain. After her third day on morphine, her oncologist said he’d have to take her off it: “‘It’s addictive,”‘ Kennemer recalls the doctor saying. “I looked this guy in the eye and said, ‘What does it matter?’ He said, ‘I’ll lose my license if I don’t cut her off from morphine.’

“If you can’t eliminate the pain, you have to medicate it,” says Kennemer, who forged an alliance between the Oregon Catholic Conference, Citizens for a Drug-Free Oregon and the Oregon Right to Die group.

As patients secure their rights, doctors have also been emboldened to launch counterattacks. In 1994 the Florida Board of Medicine went after Dr. Katherine Hoover, charging that she had overprescribed controlled substances to seven patients. After a two year battle in which Dr. Hoover acted as her own lawyer, the appeals court chided the medical board for being “overzealous” and dismissed its case as “founded on a woefully inadequate quantum of fact.”

Hoover had moved to West Virginia to run her family’s farm and practice medicine. Given the Florida imbroglio, she was rigorous about documentation. She required her patients to sign a contract about the risks and benefits of narcotic pain relief, and she committed them to using a single pharmacy and not misusing their medication. However, it wasn’t long before she heard from the West Virginia Board of Medicine.

The State Department of Health and Human Resources had filed a complaint with the board regarding Hoover’s treatment of five patients whose pharmacy records had been singled out for review. The complaint alleged that she had prescribed in excess of her peers. Hoover points out, however, that she is the only internist in the area committed to pain management. Who, then, are her peers?

Hoover is defending herself once again. “I am not pretending to be a lawyer. I’m doing all of this because I’m a doctor,” she says.

She has filed a $10 million suit against the State Department of Health and Human Resources and the West Virginia Board of Medicine, charging them with extortion, conspiracy to defraud and discrimination under the Americans With Disabilities Act. “Patients have a constitutional right to life, liberty and the pursuit of happiness,” says Hoover. “How can you be happy when you’re in that much pain?”

Several doctors are now considering following her lead and filing lawsuits against their medical boards for discriminating against pain patients. As Frank McNiel puts it, “A lot of the people hurting are not the ones who live on Functional Street. You’ve had three surgeries, you’re on disability, you’re broke and living in a trailer. You don’t look like Mr. Yuppie, OK?” McNiel knows that if doctors want to treat pain patients, they may have to fight a court battle to do so.

In 1995 the Tennessee Board of Medical Examiners determined that McNiel had violated several provisions of the Tennessee Medical Practice Act and had a “co-dependent” relationship with his patients. The board labeled him an “impaired” physician, forced him to surrender his DEA registration and mandated he join a co-dependents’ support group. After a prolonged hearing process that resulted in more than $100,000 in legal bills (which his malpractice insurance paid until the verdict came in and he was fired), his attorney’s advice was simple: Put your head in the guillotine and let them drop the blade. However, McNiel appealed.

justice was served this past March. A state appeals court reversed and vacated the ruling, stating in its decision: “The conclusions of the board and its judgment are without necessary support of material and substantial evidence.” McNiel succeeded in blowing up the board’s opiophobic logic that when it comes to drugs, no proof is required: We would not accuse you if you were not guilty.

Despite his victory, McNiel still awaits a knock on his door: “I have a moral obligation not to ignore patients who come to me,” he says. “But I’m terrified every time I write a prescription.”

from the website drcnet.com 

 
 

 

            

Chronic pain treatment

 

One of the most serious problems in modern medicine is the under-treatment of patients in chronic pain.� More than 30 million patients suffer from chronic pain, and seven million of them cannot relieve their pain without opioids (narcotics), but only 4,000 doctors in the country are willing to prescribe them, according to the National Chronic Pain Outreach Association.� A New England Journal of Medicine editorial stated that 56 percent of cancer outpatients and 82 percent of AIDS outpatients were undertreated for pain, as were 50 percent of hospitalized patients with a range of conditions.Today’s massive denial of pain medication is a consequence of the social, regulatory and law enforcement climate created by the War on Drugs. Doctors can suffer loss of license or even incarceration, when the inevitable mistake of providing medicine to a dishonest patient who may be misusing or diverting medication occurs.� The climate has led to a situation in which most physicians are incorrectly trained in pain management and under- or non-treatment of pain is the norm.� Doctors who treat pain correctly typically must exceed the usual prescribed dosages, and in so doing draw the scrutiny of state medical boards and the U.S. Drug Enforcement Administration (DEA).� The DEA demands that doctors and pharmacies regularly provide them with records of every prescription for controlled substances that is written or filled.As Virginia physician William Hurwitz, whose case was featured on Sixty Minutes, explains, “The quasi-criminal liability imposed on physicians distorts clinical information and medical judgment, impedes the development of clinical expertise, undermines the ethical commitments necessary to medical practice, and leads to the abandonment, wasted lives, and deaths of patients with intractable pain.� Holding physicians liable for the misbehavior or dishonesty of their patients turns physicians into policemen and is, in principle, incompatible with effective medical care.”� Frank McNeil, a family practitioner in Knoxville, Tennessee, explains, “As doctors, we believe in people, but the government expects each of us to be an FBI unit. We’re supposed to trust no one.”The fate of pain patients in the “police state of medicine” is grim.� Day after day of constant torment drives many to depression or even suicide. Many patients receive enough medicine to provide relief for four hours out of the day, and have to decide which 20 hours of the day they will spend in extreme pain.� Frightened doctors sometimes “fire” patients, cutting them off from pain meds suddenly, thereby putting them at risk for shock or withdrawal.� And those patients receiving adequate prescriptions live in fear that their doctors could be put out of business by the government or frightened into cutting them off.� Former addicts as well as former prisoners are in the worst situation of all, being automatically suspect — but pain patients from these backgrounds need and deserve proper treatment nonetheless. 

 

Pain Medication: Will I Become Addicted?

Addiction is a Real Risk, But Most Painkillers are Safe When Used Properly

From Marc Lallanilla

Created February 12, 2009

About.com Health’s Disease and Condition content is reviewed by the Medical Review Board

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(LifeWire) – Some pain medications have the potential for addiction, especially opioids, painkillers originally derived from the poppy plant. Despite this, most patients are able to use opioid pain medication without becoming addicted.Addiction to pain medication, however, is a serious problem worldwide. The Drug Abuse Warning Network (a program of the U.S. Department of Health and Human Services) noted that the opiate painkiller Oxycontin (oxycodone) was involved in more than 22,000 overdose-related emergency room (ER) visits in 2002 — an increase of 560% since 1995. Similarly, Vicodin (hydrocodone) was noted in more than 25,000 ER visits, and Duragesic (fentanyl) was involved in more than 1,500 ER visits, a staggering increase of 6,745% over 1995.

A number of factors have contributed to the growth in pain medication addiction. The availability of prescription drugs over the Internet has fueled an international trade in illicit drugs, including many counterfeit drugs. Doctors are also writing more prescriptions for painkillers: In 1991, about 40 million prescriptions for opioids were written; in 2007, that number jumped to 180 million.

Drug Abuse

The drugs most commonly abused fall into four general categories: stimulants like caffeine, nicotine and methamphetamine; sedatives like alcohol, benzodiazapenes and barbiturates; opioids (including heroin and opioid painkillers); and other drugs, like marijuana and hallucinogens.

Opioids are generally prescribed to be taken orally, but abusers often crush the pills into powder and snort or inject the powder. Because some opioids, like Oxycontin, were developed to be slow-release formulas, snorting or injecting opioids can result in a potentially deadly overdose.

Addiction to painkillers is not, however, the same as a physical dependence, which is common when such medication is prescribed on a long-term basis. Tolerance, when the body naturally adapts to the medication, can happen with some pain pills, which means higher doses will be required to experience the same level of pain relief. Addiction includes both physical dependence (tolerance and withdrawl) and out-of-control use.

The process by which a patient becomes addicted to prescription drugs is the subject of ongoing research. Use of the most commonly abused, prescribed medication, including opioids, causes a release of dopamine in the brain. Dopamine is a neurotransmitter that affects the brain’s processing (among other things) of reward-seeking behaviors and pleasure sensations. The brains of some people are more prone to addiction for reasons not yet well understood.

Patients’ personal histories also help reveal those who are at higher risk for abuse of prescription drugs, including painkillers. Patients with a history of alcohol or drug abuse, for example, are more likely to become addicted to prescribed pain medication. Younger patients, too, are more likely to become addicted, as are patients who work in a healthcare setting, where access to prescription drugs is easier.

Minimizing Addiction

There is some controversy over the long-term use of opioids for managing chronic pain, but there is also a growing consensus that for most patients, a well-managed treatment program of opioid use is appropriate.

To minimize the likelihood of painkiller addiction, doctors are advised to stay up-to-date on advances in pain management, to make thorough examinations and take in-depth patient histories — especially regarding substance abuse — and to develop a strategy for monitoring patients when prescribing opioid pain medication.

Patients, too, have an important role to play in preventing addiction to prescription pain medication. Complete honesty with the prescribing doctor — including disclosing information about past alcohol or drug abuse — is critical to successful pain management with opioids.

Patients and doctors alike, as well as friends and family members, should be aware of the signs of prescription drug abuse and addiction. These include getting multiple prescriptions from more than one doctor, “accidentally” misplacing prescriptions or losing pills, stealing or forging prescriptions, and taking higher doses of medication than prescribed.

Treatment for addiction to prescription pain medication includes managed withdrawal and detoxification, therapy such as behavioral counseling and groups like Narcotics Anonymous, and medications including methadone, buprenorphine and naloxone.

Sources:

“NIDA InfoFacts: Prescription and Over-the-Counter Medications.” nida.nih.gov. Aug. 2008. National Institute on Drug Abuse, National Institutes of Health. 26 Jan. 2009 <http://www.nida.nih.gov/infofacts/PainMed.html&gt;.

Recently found article about e-patients… good read

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I actually found this on facebook from another fellow lupie. This is interesting because it discusses whether we as patients should become better consumers of our own health. Enjoy and share your opinions…

Healthcare & Social Media: Are e-Patients Crossing the Line?

Tweeter asks:  ARE E-PATIENTS CROSSING THE LINE?

What line? Where is the line? In former times the line was malpractice. Honestly, that was the only solution to an inadequate or inept doctor. If a patient had a doctor that did not listen and the patient got even sicker or died as a result, he or his family could sue. It was simple. Everyone knew his role.

Patients asked doctors for answers. Patients paid the doctor for answers. Patients had questions and doctors had answers. If patients were harmed in the process, a lawsuit could be filed.

 

Today, it’s complicated. Patients who don’t get answers from their doctors can persevere in other ways. They don’t have to accept a suspect or inadequate answer. They can research information online. They can network with other patients. They can conduct online polls on their blogs. And they can search for doctors who are better equipped to manage their cases.

So, where are the lines today? Are patients who read medical journals out of line? Are patients who share their own experiences with others out of line? When do e-patients cross some kind of line of what is acceptable? How do they know when they violate the unwritten law, transgressing into a sacred realm of medical knowledge?

Two ways to look at e-patients

There are two ways to look at the modern scenario. There is the “Us versus Them” mentality where doctors and e-patients square off against one another. They draw lines between “our side” and “their side.” Alternately, there is the partnership model where healthcare becomes a collaboration between patients and doctors. Both have knowledge, one as an expert in his field (the doctor) and one as an expert in himself (the e-patient).

Most patients have their own examples of struggles to get answers from when doctors do not adequately address the concerns of patients. I will use two that affected me personally. I choose them because they demonstrate the dead end of drawing “lines” that sound too much to me like “Don’t drink from this fountain” or “Sit in the back of this bus.”

Two examples of un-empowered patients

My first example came when my husband was entering seminary. Money was tight and healthcare was pay as you go. On a retreat weekend, I experienced a sudden onset of excruciating joint pain I had not experienced before. At first, the pain was in my neck accompanied by redness. I suspected a spider bite since we were in the woods. Large doses of ibuprophen only helped a little. When the pain spread to other joints, the VIP’s at the event became concerned and insisted I seek medical attention.

My visit with the urgent care doctor was short. I described my symptoms and showed him the lacy red rash that covered my legs. He told my husband there was nothing wrong with me. My husband paid him one hundred dollars. I felt powerless to argue.

There was a happy ending: I arrived home to see that my little girl had a red face that looked like sunburn. If you hadn’t guessed it by now, I’m sure that gave it away. I had Fifth disease caused by Parvo virus. Our pediatrician recognized it immediately. The virus resolved without treatment. But I would have been more comfortable with prednisone.

Maybe it didn’t matter that I was embarrassed or spent money I didn’t have to be insulted by an incompetent doctor who did nothing to make me more comfortable. However, a similar scenario ended tragically. My grandmother was in a car accident when I was young. When the emergency room doctors released her as healthy, she continued to experience pain. When she returned repeatedly, she was assured that she was only upset. My grandmother was bleeding internally. She didn’t recover. My family sued.

I believe that her story could have ended differently today. I believe that the bright woman could have been an e-patient if she had the opportunity. It was not a door she could have opened herself, but she could have walked through it the same as hundreds of women I see on my blog or Facebook every day. None of the doctors viewed my grandmother as a partner in her treatment. Her assertions went unheeded. Doctors and patients who are leading the way today toward patient empowerment are working to change sad endings like that.

So, are e-patients crossing the line?

I don’t believe e-patients want to usurp the role of doctors. They just want to get well – or see their loved one live on. Certainly patients should trust doctors’ judgment, but some doctors got C’s in medical school or are too busy to read the latest study or just have poor listening skills. Collaborating with patients could make them better doctors.

Are e-patients crossing the line? If so there will there be new lines. I think the roles are changing. I wear the e-Patient label proudly – for the time being at least. I don’t care what we are called – as long as we can be partners.

Kelly Young is the author of the Rheumatoid Arthritis Warrior website. Kelly’s e-patient story is on e-patients.net. Her Twitter is @rawarrior.

Note: The link it the Tweet referred to a blog written by Martin Young, MD. I do not believe that Dr. Young meant to imply that patients are crossing lines inappropriately by being e-patients. I take him at his word when he states that he supports e-patients as a concept and as individuals. He has personally been supportive of me and my work as a patient advocate. I have had discussion with him and I do believe that he is honestly concerned for our welfare as patients.

Rollercoaster (of lupus)and p.s.doctors

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Well, once again, here I am expounding the ups and downs of this disease called lupus. The big bad wolf (as it is also known) has taken a big bite out of me lately by keeping me close to my bed and not allowing me to have energy for but a few moments at once. All in all, it has been tough this last five days or so. In keeping with the promise to tell the good with the bad and ugly, I am writing this blog today to share some really good news!

Today was a decent day. I have been out of bed most of the day. Albeit, I have been on the couch for most of it, but I was out of bed! This is a considerable victory for me because a few days ago, it took all my energy just to get to the bathroom. I even babysat my grand Courtney Scarlett for two hours while her mom took my grandson to see the doctor. She is good medicine for me (as are all of my grands). She sat quietly on the couch and watched Dora and Team Umizoomi with Meemaw.

I have found that, contrary to popular belief, children are quite intuitive about adults. In my experience with my grandchildren, I have found that they know when I can or cannot be more active with them. My grandchildren have seen their grandmother in the hospital, taking many pills daily, in bed, on the couch, and basically flat on my back so many times that to them it is a normal thing that I am not able to do much physically with them. On the rare occassions when I am able to do more than my “normal”, they are astonished to see their Meemaw running or jumping or being silly. I have tried not to upset them by having them see me give myself injections of meds, or the pain when I move or walk, etc., but they have learned from infancy that this meemaw cannot do things and they accept me as I am.

It is an amazing thing that children can accept you as you are and love you still, yet most of the world at large seems to not be able to accept you as someone with a disease that doesn’t show. Most try to put you in a category of any of the following: fat/skinny, lazy, attention seeking, hypochondriac, doctor shopping, pill popping, all in your head, making it up, oh please; types of things so they can justify making fun of you or dismissing your illness altogether. We have all had this in some form or another in our disease process. It can even include doctors we are looking up to for help and healing.

I am going offtrack now but on to a rant of mine so here goes…

Ok, here is a tidbit about me. I love to watch the television showMystery Diagnosis“. Do you know why? It is because there are many more people out there who have serious and debilitating diseases that have been in the same boat as many of us lupies. They have been to many different doctors, who have told them any number of things and even dismissed them altogether, only to find that one rare gem of a doctor who listened and put it all together.

On this show, I heard a comment from one of the doctors who had helped one of these people to find the correct diagnosis and was treating the patient for it. He made the statement that doctors should know the difference between lumping and sifting. He said doctors should always look at the overall picture (lumping) of the patient and how they present to the doctors versus the opposite by treating each small bit of the disease piece by pice by many different doctors (sifting). For example, if you have lupus, you may have gone to your primary care doctor first, who then referred you to another doctor who treated you for one thing, then sent to another doctor who treated you for another thing, but in the long run, none of them saw the overall picture of the lupus constellation of symptoms. It happens on almost every show on this tv series. It never ceases to amaze me that so many of our doctors out there are just skimming by on the first easy thing they can find to “take care of” the reason for your visits.

I know, there are many good doctors out there. I have several in fact. However, it is by trial and error that I have happened upon them. I really do trust my doctors and the main reason why is that they respect me as a person. If I call or come in to see them, there is a valid reason and they know it. As a former medical professional, I am not some one who is afraid to speak my mind. I have personally “fired” a couple of doctors in my time. I have moved to different states and kept my doctors here in Ohio because I could not find ones who were as qualified and competent as the ones I see here. I have tried to find some, but even if it starts out good, they always seem to let me down by assuming I am some ignorant female who is attention seeking. I have heard that one before. They fail to see that I am sick, truly sick, and only want to be well, or as well as I can be.

The thing I want to stress most emphatically is that we patients are the consumers here. We are the ones who pay the bills. If you are not satisfied with your care, find another doctor.   As frustrating as the process may be, in the long run, a doctor who respects you and your feelings is the one you will get the best care from.

One of my doctors that I know as a person as well as a doctor, always gives me hugs when she sees me, either in her office, or in public. She is a nurturing and caring person who believed me when I thought I was losing my mind. She knew that I was not making this stuff up and she kept on until we found out why. We all need and deserve a doctor like this one.

I know, many doctors are overworked and only have a few minutes to give to each patient, however, by being prepared and taking an active role in our medical care, we show them that we are as responsible for our care as they are and a true healer will appreciate us taking that active role. I say beware of those doctors who have a god complex. If they think your ideas or your research or your opinions are of no concern and act like you are silly for any of them, then leave at once and find someone who will take the time and give you their respect. After all, it is YOU who is sick, not them. It can be very enpowering to find where your doctor falls in this equation and enlightening to see how they feel about you and your feelings.

Now what has brought this on, this rant of mine? I read an article that many doctors think patients should not become empowered by researching their diseases and asking questions from this research. Hm… interesting indeed. I think I have made my point on this subject clear. In the meantime, I hope you all find doctors who are genuinely interested in your health and care and give you the respect you deserve. I now will step off my soapbox…

Plaquenil

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This is another of the medications I am taking. It is used to treat malaria and autoimmune diseases. It does have some serious side effects though. It also can take time to kick in and help. From the website, webmd here is the informaiton on Plaquenil:

PLAQUENIL

Hydroxychloroquine is used to prevent or treat malaria infections caused by mosquito bites. It does not work against certain types of malaria (chloroquine-resistant). The United States Center for Disease Control provides updated guidelines and travel recommendations for the prevention and treatment of malaria in different parts of the world. Discuss the most recent information with your doctor before traveling to areas where malaria occurs.

This medication is also used, usually with other medications, to treat certain auto-immune diseases (lupus, rheumatoid arthritis) when other medications have not worked or cannot be used. It belongs to a class of medications known as disease-modifying antirheumatic drugs (DMARDs). It can reduce skin problems in lupus and prevent swelling/pain in arthritis, though it is not known exactly how the drug works.

OTHER USES: This section contains uses of this drug that are not listed in the approved professional labeling for the drug, but may be prescribed by your health care professional. Use this drug for a condition that is listed in this section only if it has been so prescribed by your health care professional.

This medication may also be used for other types of infections (e.g., Q fever endocarditis).

How to use Plaquenil Oral

Hydroxychloroquine is usually taken with food or milk to prevent stomach upset. The dosage and length of treatment are based on your medical condition and response to therapy. In children, dosage is also based on weight. For malaria prevention, take this medication by mouth once a week on the same day of the week, or as directed by your doctor. Mark a calendar to help you remember. This drug is usually started 2 weeks before entering the area with malaria. Take it once weekly while in the area, and continue taking it for 4 to 8 weeks after leaving the area or as directed by your doctor. To treat malaria, follow your doctor’s instructions.

For lupus or rheumatoid arthritis, take this medication by mouth, usually once or twice daily or as directed. Your doctor may gradually increase your dose. Once you have been taking the medication for a while and your condition has improved, your doctor may instruct you to lower your dose until you find the dose that works best with the fewest side effects.

Use this medication regularly in order to get the most benefit from it. If you are taking it on a daily schedule, take it at the same time each day. Take this medication exactly as prescribed. Do not stop taking it without talking with your doctor, especially if you are taking it for malaria. It is important to continue taking this for the length of time prescribed. Stopping prevention or treatment too soon may lead to infection or a return of the infection.

Inform your doctor if your condition persists or worsens. It may take several weeks or months to see improvement if you are taking this for lupus or arthritis. Hydroxychloroquine may not prevent malaria in all cases. If you experience fever or other symptoms of illness, seek immediate medical attention. You may need a different medication. Avoid exposure to mosquitoes. (See also Notes section.)

SIDE EFFECTS

Nausea, stomach cramps, loss of appetite, diarrhea, dizziness, or headache may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly.

Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.

Tell your doctor immediately if any of these unlikely but serious side effects occur: arm/leg/back pain, fast heartbeat, hair loss/color change, mental/mood changes (e.g., anxiety, depression, hallucinations), ringing in the ears/hearing loss, worsening of skin conditions (e.g., psoriasis).

This medication may infrequently cause serious (sometimes permanent) eye problems or muscle damage, especially if you take it for a long time. Seek immediate medical attention if any of these unlikely but very serious side effects occur: sensitivity to light, vision changes (e.g., blurred vision, seeing light flashes/streaks/halos, missing/blacked-out areas of vision), muscle weakness.

Tell your doctor immediately if any of these rare but very serious side effects occur: severe stomach/abdominal pain, severe nausea/vomiting, easy bleeding/bruising, signs of infection (e.g., fever, persistent sore throat), seizures, shortness of breath, swelling ankles/feet, extreme tiredness, dark urine, yellowing eyes/skin.

A very serious allergic reaction is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction may include: rash, itching/swelling (especially of the face/tongue/throat), dizziness, trouble breathing.

This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.