Five years after Danny, age 65, had retired, he had an attack of gout. Kathleen, his wife of 40 years, drove Danny to his appointment with the foot doctor, who prescribed a common drug to treat the problem. A few weeks later, his primary care doctor changed the dose, and added another drug. But before long Danny had another flare up, so he was sent to see a rheumatologist -- who changed the dose again.
After he had been taking the main drug for a month or two, Danny complained about headaches and insomnia to his primary care doctor. He asked if his symptoms could be related somehow to the gout, and the doctor said no. Danny left the doctor’s office with an order for a CT scan of his sinuses and a prescription for a narcotic painkiller. When the CT scan revealed nothing, Danny was referred to a neurologist.
Danny felt lucky that Kathleen didn’t mind driving him to all of his appointments. He just wasn’t up to driving himself. The neurologist and rheumatologist were in Philadelphia, nearly a two-hour drive each way from the small town where they lived.
By now, his symptoms included memory loss, headaches, sleeplessness, weight loss, reddened skin, gritty and irritated eyes, and out of control blood pressure that had landed him in the emergency room twice. Danny asked the neurologist if any of his symptoms could be related to his gout, and was told no.
The neurologist ordered an MRI and also an MRA, which is a magnetic resonance angioplasty, used to study blood vessels when blood pressure is too high. None of the tests showed anything that explained why he was having so many problems or that resulted in any change to his treatment.
Danny also saw an optometrist, and was told that he had a severe allergy that was irritating his eyes. Various eye drops were prescribed in an attempt to help. Next, his primary care doctor decided that the problem was that Danny was depressed, and prescribed medicine that made Danny feel like a zombie.
Danny’s world had shrunk to the point where it consisted mostly of pain and disability, doctors’ visits, medical tests, and prescription medicines. Danny and Kathleen have 6 children and 17 grandchildren. Three of their children live nearby, and the rest are scattered across the country. Danny had stopped traveling to visit family, and didn’t even want to see the grandchildren who lived nearby.
He was too exhausted to take them on outings, and didn’t want them to see him the way he was. He stopped working in his woodshop, where he used to make toys both for his own grandchildren and to give away at Christmas.
He didn’t have the energy to do any of the things Kathleen wanted to do, even if it was just going to the grocery store or driving around to look at the autumn colors on the trees. They had been in the habit of doing the daily crossword puzzle together, and even that became too much for Danny to manage.
Two of his daughters repeatedly questioned him about his health and his doctor’s visits -- one via phone, email, and Skype, and one in person. One of them wanted him to change doctors, and another one told him that he was taking too many prescriptions.
Danny decided that he had to do something, if only to get them off his case. Before he retired, Danny had been an accountant. He was used to collecting and organizing a lot of detailed data to make sense out of it. He created a methodical record, as best he could, of every doctor’s visit, test, prescription, and symptom he’d had since the first gout attack had sent him to the foot doctor. Fortunately, Kathleen helped him remember everything.
When he looked at all of the information in an organized way, his attention kept coming back to the main drug he had been prescribed to treat the gout.
Could one drug be responsible for so many symptoms?
Without telling his doctors, he staged a little scientific experiment: he delayed taking the drug for part of a day, and many of his symptoms subsided, although his blood pressure was still high. When he took the drug, the symptoms came right back. It is worth noting that published lists of common side effects of the drug include: irritation of the eyes, loss of appetite, red skin, and unexplained weight loss. These are all symptoms that Danny had.
Armed with his Excel spreadsheets, he presented his theory to his neurologist, who agreed with his conclusions and started to taper Danny off the drug. Over a period of several weeks, he was also tapered off most of the other drugs he was taking. Before long, he was feeling much, much better.
Danny said, “Medicare and I have spent a lot of money on medical care, testing, travel and lodging. All of that could have been avoided if people listened to the patient and delved a little further.”
Danny also rediscovered what he had long known: his first love is his family and his greatest priority is to spend time with them. He recently flew to Atlanta for a surprise 40th birthday party for one of his sons, and to Minnesota to help his brother celebrate his 75th birthday. He is putting plans in place to take all of his grandchildren who live in Pennsylvania on a day trip to hike a section of the Appalachian Trail. He plans to be a vital part of their lives for a long time to come.
Notice that the turning point for Danny can provide some clues for you. If you are on a drug that must be taken at precise intervals, of course an experiment like his could cause you serious problems. Doctors will advise you not to make any changes to your medication regimen without talking to them first.
However, the essential part of Danny’s solution is one that anyone can put in place: he prepared detailed records of the action steps his doctors took and how his symptoms changed after each treatment change. Then he provided his records and his findings in writing to his doctor, and they had a discussion about them.
While research shows that most doctors are very quick to dismiss the possibility that new symptoms are side effects of prescription drugs, it is also true that when presented with data, many doctors will listen. If your doctor is not comfortable having such a discussion with you, that might be a hint to consider finding another doctor.