Medical decision-making among treatment options: The signature medical mistake of my life

     Dr. Jerome Groopman and Dr. Pamela Hartzband wrote a clear and insightful book, Your Medical Mind:  How to decide what is right for you.  They illustrate decision-making through stories about themselves and their patients.

     Dr. Groopman’s father died from poor care for a heart attack, back in the days when some doctors thought that removing the heart attack patient’s blood would unburden the failing heart.  As a reaction, Dr. Groopman became a “maximalist,” believing that modern medical interventions were generally good things.  Following that belief, when suffering from persistent excruciating back pain, he opted for aggressive surgery—spinal fusion--when merely waiting might have been preferable.  The surgery gave him lasting pain and debility; he called it “the signature medical mistake of my life,” with disastrous consequences.  It also gave him a long-term belief in making more nuanced decisions about treatments for himself and his patients. 

     Years later, his doctor advised him to take a statin to reduce his high cholesterol.  In light of the heart disease in his family, he knew he had to do something.  However, Dr. Groopman knew of a friend who had incurred lasting muscle pain, a common side effect of statins.  So he negotiated with his doctor to take a smaller dose of statins, and found that the smaller dose was great enough to lower his cholesterol, and yet small enough to avoid any muscle pain.  

Advice to patients:  Learn from the experiences you and your friends have had and your family history.  Consider them and your biases when making decisions about your medical treatment.  

Read another story about deciding among one’s options for medical treatment.

Robert Gold's book, Are Your Meds Making You Sick?: Just what Santa's doctor ordered

In this day and age, Santa's doctor would have him taking a statin for his cholesterol, and an ACE inhibitor or calcium channel blocker for the high blood pressure caused by the tension of meeting all those urgent customer demands. Luckily, the interactive effects, and potential adverse reactions to those and many other drugs, are discussed in Robert Steven Gold's new book, Are Your Meds Making You Sick?: A pharmacist's guide to avoiding dangerous drug interactions, reactions and side effects.

Gold, a hospital pharmacist and instructor of clinical pharmacy at Purdue University, lists 16 rules of safe medication use. In each of 30 case studies, he describes a patient, his or her symptoms, the suspect meds, a summary, the mystery to be addressed, the drug "culprit" and "accomplice," the solution, the odds that you'll encounter a problem, and advice for those taking that medication. The case studies illustrate the usefulness of the rules.

Professional patient advocates should buy this book so they can advise patients who take any of the dozens of drugs that Gold describes.

Gold's book is available from the publisher, Hunter House. Thanks to Sean Harvey for connecting us and making available a copy of the book.

I CAN'T TASTE ANYTHING: Zicam Cold Remedy Nasal Gel

Charlene's friend’s story:
I want my friends and loved ones to know what has happened to me in hopes that it will never happen to you or anybody you care about.

About 10 days ago, I felt a cold coming on; so before I went to bed I used Zicam Cold Remedy Nasal Gel. It's supposed to help you "get over your cold faster." Immediately after I sprayed it into each nostril I felt the most horrific burning sensation imaginable. It literally felt like I had sprayed pepper spray directly into my brain. It burned all the way to the top of my skull. Mynasal passages swelled, my eyes watered – the burning lasted all night long into the next day. 
 


After about a day, I realized I couldn't taste anything and I thought, "Wow - I must really have a bad cold." Then I noticed that I couldn't smell coffee brewing, couldn't smell my perfume when I put it on, couldn't smell the popcorn I burned, couldn't smell my favorite candle. Ipanicked and starting smelling everything that I could find that had really strong odors – ammonia, finger nail polish remover, bleach, etc. I couldn't smell ANYTHING!

I started tasting everything that had really strong tastes such as HOT salsa, raw red onions, Doritos, coffee. I couldn't taste ANYTHING! 
 
I told my mother about this and she said, "Oh, I've heard Zicam can affect your Olfactory nerve."

I went online, typed in "Zicam side effects" and bam - up popped all sorts of web sites with people reporting the same thing I experienced. It seems that this past June, Zicam pulled the swabs for adults and children off the shelf but not the nasal gel. 
 


I went to my ENT and he said the Zicam had basically "FRIED" my Olfactory nerve and the results are most likely permanent. He put me on a strong dose of a steroid called Prednisone in hopes of recovering ANY bit of the nerve damage but he told me to "take this and pray." He said he had read about the side effects of Zicam and couldn't believe it is still on the shelf. It isn't FDA approved.

I am taking the Prednisone and praying but nothing is happening. I LITERALLY CANNOT SMELL OR TASTE ANYTHING! I can tell if foods are hot or cold, I can tell the consistency and I can faintly detect if it is salty but that is it. 
 


PLEASE, PLEASE, PLEASE pass this on to everyone you care about. I don't want this to happen to ANYONE else!!!!!!!!!! And if you have Zicam in your medicine cabinet—THROW IT AWAY!

Read the FDA Advisory.

Read a story about a very different kind of treatment for a nasal condition. Thanks to Charlene Casucci for sharing this story.

I was broad-sided: Rolling meta-analyses to detect drug side effects

Anthony De Carlo's story:
In an auto accident on 6/15/01 in New Jersey, I was broadsided by a woman on a phone running a red light. I was in the hospital three days, banged up. I hurt my knee and back when I was hit.

I took Bextra for two years, 
and Celebrex. I have had one heart attack and two smaller heart attacks. An EKG revealed I have had three silent strokes, one in 2003 while I was taking Bextra and also Celebrex. I later had the EKG confirmed at a teaching hospital in New York City. I was also diagnosed with a deteriorating heart valve, which will probably require surgery.

Due to complications, I am disabled and can't work.


Though studies had been performed about the side effects of Bextra, the results had not been put together. If they had been, the dangers of Bextra would have been known years sooner. Instead, many people like Anthony suffered from major side effects. Eventually, Pfizer took Bextra off the market in 2005, acknowledging its dangerous increase in heart attacks and strokes.

Drug makers have removed several other drugs from the market after learning of their health problems. In the most recent issue of the Archives of Internal Medicine, Dr. Joseph Ross and his colleagues describe a method of statistically pooling data on drug effects in a rolling meta-analysis that could have informed Merck of the cardiovascular effects of Vioxx years before it withdrew the highly profitable drug from the market. Dr. Michael Steinman mentioned Bextra as a case in point, and added several other examples: Bayer removed the cholesterol-lowering drug Baycol from the market in 2001 after reports of serious muscle problems. Novartis withdrew Zelnorm, a drug for irritable bowel syndrome, from the market after learning of its increased risk of heart problems.

Advice: Read the story of a whistleblower on the BBC website.

Read another story about Vioxx. Thanks to Natasha Singer for the source story in today’s New York Times.

For more than two years: Genetic tests and personalized medicine

For more than two years, Jody Uslan had been taking the drug tamoxifen in hopes of preventing a recurrence of breast cancer. Then a new genetic test suggested that because of her genetic makeup, the drug wasn't doing her any good.

"I was devastated," she said. She stopped taking tamoxifen, and is now evaluating alternative treatments.

Experts say most drugs, whatever the disease, work for only about half the people who take them. For the others, their genetic makeup makes the drug ineffective, e.g., because the person may lack an enzyme to process the drug appropriately. The hope of "personalized medicine" is that doctors will be able to consider the likely effectiveness of a drug for a particular patient in light of that person’s relevant genes, in deciding which drug to prescribe.

Scientists are learning about a growing number of genetic markers that determine the likely effectiveness of particular drugs. Some genetic tests are available, many at a cost of several hundred dollars. The Food and Drug Administration has formally recommended genetic tests to guide the selection or use of some drugs, but has not yet made formal recommendations on many others.

Advice: To avoid the side effects, cost, and nuisance of using certain drugs unnecessarily, talk to a genetic counselor if you use Herceptin (trastuzumah), Erbitux (cetuximab), Vectibix (panitumumah), chemotherapy for breast cancer, Tamoxifen, Ziagen (abacavir), Camptosar (irinotecan), Tegretol (carbamazepine), Coumadin (warfarin), or Celebrex (celecoxib). Ask the counselor whether you should have a genetic test to determine the drug’s likely effectiveness for you.

Read another story about the value of genetic counseling.

Thanks to Andrew Pollack for the source article in today's New York Times.

Thousands of patients won't take it: Online drug studies using PatientsLikeMe

Karen Felzer's father has ALS (amytotrophic lateral sclerosis), or Lou Gehrig's Disease, so she read with special interest an article about the results of a new drug. Italian researchers had published a small study in February saying that lithium, a drug used to treat bipolar disorder, seemed to slow the progress of ALS.

A scientist herself – she's a seismologist - Karen helped to launch an online study by patients of the effects of the drug. Participating patients use the web site PatientsLikeMe.com. Karen says, "We want to keep track of how people are doing on [lithium]. It's important for the whole community."

Lithium didn't seem to help her father, and he experienced some side effects, so he stopped taking the drug. That is consistent with the reports of other patients, which indicate that lithium seems much less effective than reported in the Italian study in the Proceedings of the National Academy of Sciences.

As a result, says James Heywood, the co-founder of PatientsLikeMe, less than a year after the Italian study was published, "we now have data on over 100 patients who have been on a drug long enough to demonstrate the hope of that drug was not what was originally assumed – and that means thousands of patients won't take it."

Advice to patients interested in clinical drug trials: Look into PatientsLikeMe.

Read another ALS story.

Thanks to Carolyn Johnson for the source article in the Nov. 17 issue of the Boston Globe.

With hormone pills, radiation, surgery and grit: Skin lotion for cancer patients

Kairol Rosenthal, 35, is a choreographer and writer in Chicago. For the last seven years she has battled thyroid cancer with hormone pills, radiation, surgery and grit. She has had to contend with 101-degree fevers, heart palpitations, and a severe lack of appetite.

The hormone therapy to slow the growth of the tumor, leaves red blotches on her face and bone-dry patches along her jaw line.

"I have not yet made my peace with skin that doesn't look good," she said. She spends much of her free time in hunting for news about thyroid cancer. She is writing a book about living with the disease.

Radiation can cause what looks and feels like a sunburn on the area that the beam passes through to get to cancerous cells. Chemotherapy can make the skin and lips feel dry and itchy because it indiscriminately tries to damage all fast-growing cells, including skin cells.

Kairol heard a radio ad for Lindi Skin, a skincare line of products designed for cancer patients. Several companies now make skincare products for cancer patients.

Depending on who you ask, such products give patients one more tool to ease side effects, or a false hope that a costly lotion will be more effective than a mild drugstore lotion.

Oncologists and dermatologists are now looking into these products because cancer-fighting drugs called targeted therapies can cause rashes so severe that some patients threaten to drop out if they are left untreated. As of now, there is no scientific study that shows these products are any better than less expensive and less glamorous products like Cetaphil or CeraVe.

Yet some patients prefer them. Dianne Dassa, a breast cancer patient in New York, said the Lindi body wash and serum helped heal her radiation burn and her psyche. And "they were so beautifully packaged, I felt like I was getting a gift."

Advice: As a gift, you can give the fancy lotions to the cancer patient you care for. Cancer patients themselves can buy the less expensive drugstore products that have been shown to be effective.

Read a story of an entrepreneurial cancer survivor.

Thanks to Kayleen Schaefer for the source article in today's NY Times.

I got my mother back: Overuse of antipsychotic drugs in nursing homes

Last fall, Theresa Lamascola of the Bronx, suffering from anxiety and confusion, was put on the antipsychotic drug Risperdal. When she had trouble walking, her daughter took her to another doctor, who found that she had unrecognized hypothyroidism, a disorder that can contribute to dementia.

She was moved to a nursing home to get the problems under control. But things only got worse. She "was screaming and out of it, drooling on herself and twitching," said her daughter, a nurse. The psychiatrist in the nursing home stopped the Risperdal, which can cause twitching and vocal tics, and prescribed a sedative and two other antipsychotics.

"I knew the drugs were doing this to her," said her daughter. "I told him to stop the medications and stay away from Mom."

Not until another doctor took her off the drugs did she begin to improve. He prescribed Aricept. "It's not clear whether it was getting her hypothyroid and other medical issues finally under control or getting rid of the offending medications. But she had a miraculous turnaround," said the new doctor.

She still has dementia but she went from confinement in a wheelchair – unable to sit still and screaming out in fear – to being able to walk with help, sit peacefully, have some memory and ability to communicate, understand subtleties of conversation and even make jokes.

Or, as her daughter put it, "I got my mother back."

Researchers estimate that one third of all nursing home patients have been given antipsychotic drugs.

Advice to people with elderly relatives in a nursing home: Ask the doctor about alternatives to antipsychotic medicines.

Read another story about drug side-effects in the elderly.

Thanks to Laurie Tarkan for the source article in today's NY Times.

When I play, it feels like a massage: Synesthesia as an adverse drug reaction

Prof. Sherrilyn Roush woke up one morning seven years ago to discover that the left side of her body had gone numb, with a stroke. The day before, she had taken a prescription decongestant with ingredients that were suspected of causing strokes in young women. The decongestant had caused a lesion the size of a lentil in her mid-brain. Five months later, the Food and Drug Administration took the drug off the market.

Sherrilyn did not realize that her stroke would lead to sensations that few people had ever experienced. She began to feel tingling on her body in response to sounds. Today, more than ever, she feels sounds on her skin.

The first time it happened, she heard the voice of an announcer on a local FM station. "I felt an unpleasant sensation on my left thigh, left arm, the back of my shoulder and even the outside of my left ear. It was the kind of icky feeling that uniformly washes over you at a scary movie,"she said. "I had to stop listening. It made me cringe."

Psychologists at Rice University have tested her over the last seven years, observing how her brain's wiring has reorganized. Their article appears in the November issue of Annals of Neurology. They call her brain’s odd mixing of the senses "acquired synesthesia," and attribute the rewiring to the stroke.

Some sounds set her teeth on edge. Others evoke pleasant feelings on her skin. The soft sound of water bubbling is "soothing, almost like a massage on my skin."

Recently, she learned how to exploit her oddly mixed up senses. "I took up the string bass," she said. "Most people get pleasure from this instrument. It is huge. It has a soft deep sound. But I get more pleasure from this instrument, right here in my left arm. When I play, it feels like a massage."

She has learned to exploit the effects of her condition, in a way reminiscent of patients whom the neurologist Dr. Oliver Sacks described in "The Man Who Mistook His Wife for a Hat." Indeed, Sacks found that music had an exceptional power to help that severely disabled man to anchor himself in the world.

Advice to people who are greatly affected by their disease: Look for innovative ways to make the best of your disease, as Sherrilyn has.

Browse for related stories in the index at the very bottom of this page, or read a story of a patient-entrepreneur who made the best of her disease.

Thanks to Sandra Blakeslee for the source article in the Dec. 25 issue of the NY Times.

Should I accept this new version of my husband?: Chronic pain management

Dear Annie,
My husband and I have been married for 20 years. He's had health problems during his time, but has always managed his pain.

Last year, he went to a pain management clinic and they prescribed narcotics. He takes them every day and is in a fog every night. He has gained weight, become sloppy, and stopped caring how I feel.

I have suggested counseling, but he refuses, saying he has no problem with our marriage. I have seen a counselor myself, but am totally torn up by this. I still receive attention from other men. I don't want to spend the rest of my life with someone who is continually numb. I have a solid job offer in another town close to family. Should I stick it out and accept this new version of my husband?
--Signed, Falling Out of Love

Annie's Advice:
Your husband doesn't want to stop taking this medication because he feels good for the first time in years. However, if he is "in a fog," he may be overmedicated, and his doctor should be told. If you've been with him for 20 years and this latest phase has lasted only 12 months, please stick it out and give him time to adjust his medication. If that doesn't help, insist on counseling for your sake so he can understand how close he is to losing his marriage.

Browse for similar stories in our index at the very bottom of this page, or read a pain management story.

Thanks to "Annie" for the letter and her response, published in Annie's Mailbox, in the Dec. 27 issue of the Boston Globe.

Like a bartender who serves a drunk customer: The physician's liability for drug side-effects

David Sacca, 75, was a very sick man, with emphysema, high blood pressure, and metastatic lung cancer. He was taking oxycodone, Zaroxolyn, prednisone, Flomax, potassium, Paxil, oxazepam, and furosemide – some of which can cause drowsiness, dizziness, and fainting.

While driving in Spring 2002, David passed out and drove off the road, hitting and killing a ten-year-old boy, Kevin Coombes, who had been standing on the sidewalk with a friend.

Yesterday the Massachusetts Supreme Judicial Court ruled that David's doctor could be sued for failing to warn his patient about the side effects of the drugs and for failing to warn him of the danger of driving while under the drugs' influence.

In writing the court's lead opinion, Justice Roderick Ireland compared the doctor's liability to that of a bartender who serves a drunk customer.

Almost every drug has side effects. Drowsiness is a common side effect of many prescription drugs. This ruling greatly expands physicians' liability for the prescriptions they write every day.

Advice: Ask your doctor and pharmacist about the likely side effects of your drugs.

Browse for related stories in the index at the very bottom of this page, or read a story of the sad consequences of a different kind of expectable side effect, from Zyprexa.

Thanks to Liz Kowalczyk for the source article in today's Boston Globe.

He resumed his normal schedule: Vice President Cheney’s defibrillator/pacemaker and side effects

Vice President Dick Cheney, who has a long history of heart disease, had minor surgery on July 28 to replace the implanted heart device that monitors and adjusts his heart rhythm (an “implantable cardioverter-defibrillator”). An annual physical the month before had showed the battery had reached the level at which replacement is recommended.

Mr. Cheney was sedated for the procedure, which was performed Saturday morning. He walked out of the clinic at mid-day, returned home, and “resumed his normal schedule,’ his spokesperson said.

Mr. Cheney has had four attacks, the first at age 37. He has had a quadruple bypass surgery and two angioplasties to clear blockages in the heart arteries.

Men of the age of Pres. Bush and VP Cheney may be too stoic to admit they are experiencing even temporary periods of disability or physical weakness. This stoicism or denial may lead them to make poor decisions. It seems that these men ignored the subtle but powerful temporary after-effects of conscious sedation, when their judgment may well have been impaired, at our peril. In both cases in the last month, their judgment before surgery that they would be just fine, thank you, right afterwards, was also mistakenly self-confident.

Advice for those recovering from same-day surgery: Admit you are not fully yourself and give yourself the day off.

You can read more from the source article in the New York Times of July 29.

The pharmacist-daughter’s mantra: Drug side effects in the elderly

Phylliss Hunt Moret’s story:

Being my parents’ primary caregiver had never crossed my mind until a critical event six years ago when my dad fell and broke his hip a week prior to my mom’s shoulder surgery. Diabetes, high blood pressure, and heart disease evolved to heart attacks, strokes, an amputation, cognitive decline, and 12+ daily medications each.

Our country "gets it" that babies and toddlers can’t take the same drugs as adults. But seniors have their own unique medication-related challenges. As a pharmacist committed to seniors’ care, I know the mantra by heart: All symptoms in a senior should be considered a drug side-effect until proven otherwise.

A common scenario: A senior gets a new prescription to treat something, say depression. Then a new symptom presents itself: confusion. The senior gets another prescription to treat the confusion, when all along the confusion was a side effect of the medicine used to treat the depression.

Why does this happen? Because seniors are at greater risk for medication-related problems due to multiple illnesses, multiple physicians, multiple medications, and multiple pharmacies.

Because studies repeatedly show that one in five seniors takes at least one medication considered potentially inappropriate, when instead there are alternatives with less risky side effects for seniors.

And because medication-related problems all too often look like common geriatric problems an d syndromes, e.g., confusion, depression, insomnia, tremors, incontinence, weakness, loss of appetite, fainting, loss of balance, falls, and more.

Because there is a scarcity of expertise among health care professionals about geriatric pharmacotherapy and the unique medication-related needs of seniors. Which means that too few health professionals know the mantra….

Advice to people with elderly parents or spouses: Remember Phyliss’ mantra: All symptoms in a senior should be considered a drug side effect until proven otherwise.

Read another of our drug-drug interaction stories, or learn more about medications that are potentially inappropriate for your parents.

Three days later, he was fine: Adverse Drug Reaction - Avandia

[Translation appears below]
A 70-year-old man with hypertension and chronic renal insufficiency presented with dyspnea, orthopnea, and paroxysmal nocturnal dyspnea. Metformin had been replaced with rosiglitazone, 4 mg/d, 1 month previously. The patient had no history of congestive heart failure. Physical examination revealed tachypnea and bilateral lower extremity edema. Chest radiography showed cardiomegaly with bilateral basilar infiltrates. Transthoracic echocardiography revealed left ventricular hypertrophy and diastolic dysfunction but normal LVEF. The serum digoxin level was slightly increased at 2.3 ng/mL. Serum creatinine values did not change. Rosiglitazone was discontinued, and intravenous furosemide was administered. Metoprolol, digoxin, minoxidil, and verapamil were replaced with losartan and felodipine. After 3 days, the patient was asymptomatic.

Translation: A 70-year-old man with high blood pressure and bad kidneys came to the hospital because he had a distinctive kind of rapid and labored breathing. Examination and test results showed he had an enlarged heart, and feet swollen with fluid. He had started taking Avandia a month earlier. Though he had no congestive heart failure before the Avandia, it looked like he was getting it, or another serious heart problem. In the hospital, doctors took him off Avandia. Three days later, he was fine.

He was one of millions of patients taking the highly profitable drug.

Two days ago, researchers published an article in the prestigious New England Journal of Medicine that reviewed 40 earlier studies on the subject, and discovered that users of Avandia (thiazolidinedione) got 40% more heart attacks than other diabetic patients who were not taking it.

In one of these studies, quoted above, Dr. Asra Kermani and his co-authors “conclude that thiazolidinediones can cause pulmonary edema or exacerbate heart failure. Thiazolidinediones should be used with caution or avoided in patients with left ventricular dysfunction or chronic renal insufficiency.”

Advice to people with diabetes: Discuss with your doctor what to do. There may well be alternative drugs, not to mention other alternatives like exercise, diet, etc.

Read another of our adverse drug reaction stories, or read Stephanie Saul’s story in Tuesday’s New York Times.

Warning on ADHD Drugs: Adverse drug reactions

Yesterday, U.S. government health officials ordered the makers of drugs for Attention Deficit Disorder (ADHD) to write Patient Medication Guides to alert patients about the drugs’ adverse effects on patients’ hearts and brains. ADHD affects 5% of school-age children and almost as many adults, and use of these drugs by adults has more than doubled since 2000. The drugs include Adderall, Concerta, Daytrana, Desoxyn, Dexedrine, Focalin, Metadate CD, Methylin, Ritalin, and Strattera.

Advice to people taking drugs for ADHD: Read the FDA press release and draft medication guides. Work with your physician to develop a treatment plan that includes a careful health history and evaluation of current status, particularly for cardiovascular and psychiatric problems (including assessment for a family history of such problems).