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Readers Follow Up With Questions About Previous Columns

Ask the Doctors by by Eve Glazier, M.D. and Elizabeth Ko, M.D
by Eve Glazier, M.D. and Elizabeth Ko, M.D
Ask the Doctors | November 18th, 2017

Hello, dear readers! We're back with our monthly column to continue our conversation regarding your questions, concerns and thoughts about previous topics.

-- We'd like to begin with those of you who have written to us about specific medical issues that you or your loved ones are facing. As we've mentioned before, we can't give medical advice or suggest a diagnosis in this column. However, from the content of these letters, it's clear that you have been in contact with medical professionals.

If the medical information you have received is unclear, we urge you to follow up with your providers. Make a list of your questions. (And, as a reader has suggested, it's a great idea to make two lists and give one to the doctor.) Rank the questions in descending order of importance and then go over each issue until you receive an answer that you understand.

If you're still not getting the information you need in the form that you need it, we urge you to seek a second opinion. It can be from an entirely new doctor, or it can be from a different person in your own physician's office. It's quite possible that a nurse, nurse practitioner or physician's assistant in your health care provider's office or medical group may have a different approach to the issue that works better for you.

The final piece is to be sure to write everything down. It not only gives you a record of what was said that you can refer to in the future, but the simple act of writing something down also helps you to realize whether or not you are actually clear about what is being said.

-- We've had a number of readers ask about our answer to a woman who was experiencing urine leakage due to stress incontinence. When we stated that there are no approved medications for this problem, we meant stress incontinence only. As many of you pointed out in your emails and letters, urge incontinence, also known as overactive bladder, can be treated with an array of FDA-approved medications.

-- As scientists, we admire precision. In that spirit, we'd like to acknowledge a lapse that someone pointed out in our column about Candida auris, the so-called superbug fungus that is wreaking havoc in some hospitals. At one point, we referred to this yeast as an "organism." It is, as are all yeasts, a microorganism.

-- We've been receiving quite a few letters regarding the column about sundowning, a late-day confusion that's common among individuals with Alzheimer's disease or other types of dementia. Many of you described experiences with loved ones where symptoms similar to sundowning were caused by medication imbalances or the lingering effects of anesthesia. This is an important topic that we will take up in an upcoming column.

As ever, we'd like to thank you for your interest in, contributions to and suggestions for our columns. Every one of your letters and emails are read, and we are grateful for the time you take to write and send them.

(Send your questions to askthedoctors@mednet.ucla.edu, or write: Ask the Doctors, c/o Media Relations, UCLA Health, 924 Westwood Blvd., Suite 350, Los Angeles, CA, 90095. Owing to the volume of mail, personal replies cannot be provided.)

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A Variety of Medications Can Be Used to Treat Essential Tremor

Ask the Doctors by by Eve Glazier, M.D. and Elizabeth Ko, M.D
by Eve Glazier, M.D. and Elizabeth Ko, M.D
Ask the Doctors | November 17th, 2017

Dear Doctor: I know that essential tremor doesn't signify a disease, but the condition is very embarrassing and sometimes limits my activities. I've tried propranolol, but it didn't help. Any suggestions?

Dear Reader: It sounds as if you understand the basics, which is great. That will help you focus your search for new options. For those who are unfamiliar with the condition, essential tremor -- unlike the tremor with Parkinson's disease -- occurs only with activity and only when holding a sustained position. In Parkinson's, the tremor occurs at rest.

Essential tremor was formerly termed "benign essential tremor," but there's nothing benign about it. For some people, it can be debilitating, affecting fine motor skills and limiting the ability to use utensils to eat, write, shave or apply makeup. A 1994 study found that 15 to 25 percent of people with essential tremor retire early as a result, and 60 percent fear looking for job or seeking a promotion because of it.

The condition is termed "essential," because the tremor is not associated with any other disease. It occurs in 5 percent of people worldwide and is more prevalent as people age. An estimated 30 to 70 percent of people with the condition have a family member who also has it, but the exact cause is unknown.

So what can you do? First, be aware that caffeine, nicotine and withdrawal from alcohol or opiates can make the tremors worse, as can stress and anxiety. Medications such as anti-depressants, amphetamines, steroids and lithium also might make essential tremor more noticeable. Alcohol may ease tremors in the short term, but patients develop a tolerance and the alcohol becomes less effective. And, as I mentioned, withdrawal leads to greater tremors.

The medication you tried, propranolol, is a beta blocker -- a blood pressure drug long used to treat essential tremor. It can be used as needed to decrease tremors in stressful situations or taken daily to suppress tremors overall. But it didn't work for you, so let's assess other options.

The anti-seizure drug primidone is also often used to ease essential tremor. It decreases nerve excitability and is as effective as propranolol, with improvement rates of about 70 percent in most people. However, many patients feel sedated, nauseated and have difficulty with balance when taking primidone. These side effects occur about 36 percent of the time.

Another anti-seizure drug, gabapentin, can also be effective, particularly at a daily dose of 1,200 mg. The problem with gabapentin is that for many people, especially the elderly, it can lead to drowsiness. It might be best to start at doses of 100 mg three times per day and increase that if necessary and if you can tolerate it. Topiramate, another anti-seizure medication, has also shown benefit in easing tremor, but it too causes drowsiness.

Also worth considering: Botox injections. Botulinum toxin can decrease head tremors, voice tremors and tremors involving the arms, but because the toxin paralyzes muscles, it can cause weakness in the injection areas.

When essential tremor is severe, surgical techniques such as deep brain stimulation may be an option. In this technique, electrodes are placed deep in an area of the brain called the thalamus and are connected to an electrical-pulse generator implanted in the chest wall.

But before you consider such a measure, start by avoiding medications and drugs that make your tremors worse, and ask your doctor about primidone or gabapentin. Also, don't give up.

(Send your questions to askthedoctors@mednet.ucla.edu, or write: Ask the Doctors, c/o Media Relations, UCLA Health, 924 Westwood Blvd., Suite 350, Los Angeles, CA, 90095. Owing to the volume of mail, personal replies cannot be provided.)

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Newly Approved Gene Therapy a Breakthrough in Cancer Treatment

Ask the Doctors by by Eve Glazier, M.D. and Elizabeth Ko, M.D
by Eve Glazier, M.D. and Elizabeth Ko, M.D
Ask the Doctors | November 16th, 2017

Dear Doctor: Our daughter was successfully treated for leukemia as a child, but the chemotherapy she went through was pretty brutal. Now I've read that we have the first gene therapy for cancer, which is a huge deal. How does it work? How much does it cost? Are there side effects?

Dear Reader: We're so glad that your daughter's treatment was successful. As you mention, the therapies we currently rely on can take a steep physical toll. That's part of what makes new breakthroughs in precision medicine -- which includes targeted therapy, immunotherapy and gene therapy -- so promising and so exciting.

Before we get into the details of Kymriah, the name of the treatment you're writing about, it's important to note that gene therapy is still new and evolving. It's quite expensive, it doesn't help every person every time, and it can have side effects that range from challenging to life-threatening.

Kymriah is the first gene therapy to be approved by the Food and Drug Administration. It targets B-cell acute lymphoblastic leukemia, a cancer of the blood and bone marrow that affects children and young adults. The therapy, which received FDA approval in August 2017, was developed at the University of Pennsylvania, and is licensed by the drug company Novartis.

The therapy works by altering the genetic code within a patient's own T cells, which are part of the immune system. The T cells are extracted from the patient, frozen and then shipped to a Novartis lab in New Jersey. There, the patient's cells are reprogrammed to seek out and destroy the leukemia cells. They do this by targeting a specific protein that is unique to the leukemia cells.

When the rewired T cells are returned to the patient's body, they don't only attack the cancer, but they also multiply in number. According to the university's scientists, a single engineered cell can generate 10,000 new cells, and can survive in the body for years. This benefits patients with refractory leukemia, which is when leukemia cells persist in the body even after intensive treatment.

Side effects of Kymriah can be severe. It's possible that the altered T cells will set off a positive feedback loop within the immune system, known as a cytokine cascade. Symptoms include high fever, severe fatigue, rash, lung congestion, neurological issues and a dangerous drop in blood pressure. In some cases, these can lead to death. Because of this, Kymriah therapy may only take place at designated treatment centers, which are equipped to deal with these side effects.

Customizing each individual patient's cells is expensive. At this time, treatment with Kymriah runs about $475,000. Novartis has said it won't charge patients who don't respond to the drug within a month of treatment. Some types of financial aid are also available.

If turning your own cells into a successful cancer drug sounds hard to believe, you're not alone. When the first patient treated with Kymriah in 2010 was shown to be cancer-free a month later, even the lead scientists who developed the drug had trouble accepting it. They ordered a follow-up biopsy just to be sure.

Meanwhile, the research continues. The hope is that, with FDA approval of the first gene therapy, advancing and refining the science can move forward even more rapidly.

(Send your questions to askthedoctors@mednet.ucla.edu, or write: Ask the Doctors, c/o Media Relations, UCLA Health, 924 Westwood Blvd., Suite 350, Los Angeles, CA, 90095. Owing to the volume of mail, personal replies cannot be provided.)

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