Personal Update

Hi Everyone,

I know that I have been away for such a long time and I really have been staying away from posting personal information or stories, but I think I owe it to my followers and readers to let you know a bit about what has occurred the past few weeks.

The problems really began the weekend of my 33rd birthday when I went away to Las Vegas to celebrate my birthday of corse! I became really ill and I thought it was due to being out in the sun in the pool and having alcohol. I was having real bad fatigue and stomach cramps, but when I began vomiting blood things became more serious. I did not go to the ER until I came back home because I did not want to ruin the vacay for my children. I was hospitalized for a total of four days almost five. I had bleeding in my stomach lining but it was due to my medication thank goodness and not to my drinking or vacationing in the hot desert! The culprits were Naproxen and Ibuprofen, so I am no longer on either of those and I have learned to deal with the inflammation in my fingers, hands, and feet without the Naproxen.

What am I taking instead? I was given Tramadol prior so I am still taking this, but when the pain becomes excruciating I am taking hydrocodone but on a minimal basis due to the addictive nature. Therefore, life for this Lupie has become very difficult. Life with Lupus has become a lot more of a balancing act in my life and dealing with pain and fatigue is no fun.

Please, if any of you have questions or comments for me feel free! I hope to continue writing more personal notes, but as always the educational and informative as well so thank you for your support 😀


About Time – Get the Most Out of Your Meds


By Emily Wojcik

When Ruth Harris, 26, was diagnosed with lupus in June 2004, she found it hard to accept. “The more I started researching it, the more I was in denial.” When she learned about all her medications, it got worse. “I hated opening my medicine cabinet and seeing the pile growing. I thought, ‘There’s no way this is my life, and that I have to take meds every day to function.’”

Harris, a Riverside, CA, mother of three, tried ignoring her doctors’ advice, sometimes skipping doses altogether. Then she had a severe flare. “I ended up on life support,” she says. “I realized I shouldn’t even toy with the idea of switching my meds around or not taking one.” As Harris discovered, keeping track of your medications, and taking them correctly, is critical.

“Some medications need to be taken more than once a day because of the timing and duration of the drug effects,” says Sasha Bernatsky, M.D., assistant professor of rheumatology and clinical epidemiology at McGill University Health Centre in Montreal. “Others should be taken at night, because they may cause drowsiness. Some should be taken with food, others on an empty stomach to optimize absorption.”

Prednisone (a corticosteroid) and methotrexate are best taken at specific times of day. “I tell people to take prednisone first thing in the morning, with something in their stomach,” says Mary Anne Dooley, M.D., M.P.H., associate professor of rheumatology and immunology at the University of North Carolina’s Thurston Arthritis Research Center. “The body’s natural biorhythm is to have the highest levels of cortisol (the active ingredient in prednisone) in the morning. If you stay with your body’s natural rhythm, you’ll generally have fewer side effects. And it can irritate the stomach and doesn’t taste good—you want to take it with food.”

Likewise, an osteoporosis treatment like Boniva® must be taken with a full glass of water on an empty stomach—even coffee can cut absorption by 60 percent—so this type of medication is best taken in the morning; you also should remain upright for 30 minutes before eating or drinking anything else, to avoid irritation of the esophagus.

Interactions and Side Effects

A weekly dose of methotrexate can cause unpleasant side effects, so Dooley recommends taking it when you have a couple of days off; for example, on Fridays, if you work during the week. “If you don’t feel 100 percent afterward, you have the weekend to get through it,” she says. It’s also important to avoid alcohol while taking methotrexate.

For some medications, time of day is less important than consistency. Dooley says, “Many immunosuppressants must be taken as two doses per day, with at least eight hours between. If you’re late taking a morning dose, you should still take the second dose at the right time.”

Dooley says time of day also matters less with Plaquenil® (hydroxychloroquine), but it’s best taken with food. Non-steroidal anti-inflammatories like ibuprofen and naproxen can give people heartburn or upset stomach, she says, so take them at least two hours before you lie down at night or with medications that protect your stomach. If you’re on an infusion drug like Cytoxan®, ask your doctor about anti-nausea medications to ease side effects.

Bernatsky notes that some drugs interact with each other. “For example, you shouldn’t take calcium supplements within two to three hours of taking thyroid medication, as [calcium] can interfere with proper absorption,” of thyroid medication, she says.

How to Keep It All Straight

Tremia Appling, 41, of Oklahoma City, OK, says, “You really need to be good friends with your pharmacist, who can help you out.” Diagnosed with lupus seven years ago, Appling now takes 24 different medications. “There have been times when I think, ‘I’m tired of all this medicine. I’m tired of the side effects; they’re horrible.’ I have tried to cut down, under my doctor’s supervision, of course, but even then, the lupus is far worse than the side effects.” (Appling chronicles her experiences with lupus via a video blog on YouTube. You can find her blog by searching “Treappling1” on

Appling’s husband, Dwayne, helps her keep track of her meds. “We use a pill box with four boxes in it per day,” Dwayne says. “I fill up the box at the beginning of the week so we know if she’s run out of something. It also helps us see if she misses a dose.” Appling keeps a journal to record side effects and dosage, and Dwayne created a spreadsheet to keep track of her medications. “The list has the drug, the dosage, the frequency, the time that you take it, who prescribed it, and what it’s for,” he says. “At the bottom are her name, address, number, rheumatologist, allergies, and pharmacy. It’s all in one place, in case we have to go into the ER or to the doctor.”

Delesha Carpenter Miller, M.S.P.H., Ph.D., a fellow at the University of North Carolina’s Thurston Arthritis Research Center, says support from a friend or family member can help, provided it’s the right kind. “There’s not always 100 percent agreement between the type of support people want and the type offered. Unwanted support can feel like a loss of autonomy,” Miller cautions. The important thing is keeping communication lines open. “It’s a delicate line between being reminded and being nagged, so it’s up to you to communicate how often you would like to be reminded about medications.”

Harris says communication and organization were part of her coming to terms with her lupus. “At the beginning, I went on vacation, and I completely forgot my pills. I ended up in a really bad flare. Now it’s the first thing I pack: pills, then underwear.”

Med Time Resources

Keeping track of your medications can feel overwhelming, but there are resources that can help.
Sasha Bernatsky, M.D., assistant professor of rheumatology and clinical epidemiology at McGill University Health Centre in Montreal, says health agency Web sites often offer helpful tips. She recommends the New York State Department of Health’s “Stay on Schedule!” brochure, which you can download at, and the National Heart, Lung, and Blood Institute’s “Tips” page at

Staying in Tune—The Therapeutic Benefits of Music


By Mary Dixon Lebeau


When she’s feeling a bit down, Cynthia Sambrano often finds herself humming along to a favorite song to lift her mood:

“I believe in fairy tales 
And dreamers’ dreams like bed sheet sails
And I believe in Peter Pan and miracles
And anything I can to get by
And fireflies.”


Of course, many people are fans of Faith Hill’s Fireflies album. But for Sambrano, the song—and, in fact, many types of music—can do more than just put a temporary smile on her face. Music can be truly therapeutic for many problems the body encounters, including symptoms of stress, pain, and fatigue that many who live with lupus experience on a regular basis.


Sambrano, a board-certified music therapist and owner of Heart and Soul Music Therapy in Payson, AZ, says music therapy provides stress relief and can help people cope with chronic disease. “I use music to stay off of medication,” says Sambrano, 48, a trained concert pianist who was diagnosed with lupus and Sjogren’s syndrome at 18. “I have a very strong belief that that is why I am so healthy.”


Although Sambrano started playing piano at age 3 and studied at the Peabody Conservatory at 13, she had to give up performing because of the joint problems she was experiencing. She moved into musical theater as a director before receiving her degree and board certification in music therapy. Now she shares her own experiences with clients.

Music therapy is the development of a set of music strategies to reach desired outcomes, explains Suzanne Hanser, Ed.D., chair of the Music Therapy Department at Berklee College of Music in Boston and past president of the National Association for Music Therapy.


“It’s really a structured and formulaic approach to meeting individual needs,” Hanser says. “There are certainly elements of certain music that have been shown to impact our moods in specific ways. Repetitive, smooth melodies, such as lullabies, are more likely to induce relaxation. But some will find it boring and will get agitated by such music. In therapy, we look at individual preference, a person’s history, personal association and response to different types of music, then use the most suitable music to develop a personal treatment plan.”


Music can be selected to match the person and the mood. So classical fans can plug into Mozart or Beethoven for therapy, while others can get the same effect by listening to show tunes, the Beatles, or Lady Gaga.

“Music therapy is very client-centered,” Sambrano agrees. “We look at the whole person, which is nice for those of us with lupus, since each of us has a different story and different symptoms.”


But you don’t have to be a trained musician to benefit. While strumming a guitar or banging the drums may be therapeutic for some, others may find respite in writing songs, dancing, or simply listening to certain types of music. “When you’re engaged in music, it changes the way your brain is operating,” Sambrano says. “Your heartbeat changes; your breathing changes. You can even use music to regulate your emotions.”


Those interested in music therapy should meet with a credentialed music therapist. The therapist will assess a person’s physical and mental health, as well as his or her response to various types of music. With this information and input concerning the person’s preferences, the therapist can develop tailored music sessions.


To find a credentialed music therapist, visit the Web site for the American Music Therapy Association at “It’s really important to find someone with board certification,” Sambrano says. “A lot of people claim to do music therapy, but aren’t certified. Don’t spend money on those who claim to help you lose weight, quit smoking, boost energy, or whatever without any evidence.”


If funding is an issue, Sambrano suggests downloading music in order to burn a CD or develop a playlist on the iPod or MP3 player after your initial assessment. “It’s so easy with the Internet,” she points out. “I have a CD to lift my mood when I feel depressed, one for relaxation, another for times when I need to get pumped. Be in tune with your emotions as you’re listening to the music.”

“Be sure your favorite music is part of your day,” Hanser notes. “Rather than just having a radio going in the background, bring music to the foreground of your life.”


“When you’re tired, when you’re stressed, when you feel bad, music can really help change your mood,” she adds. So switch on soothing sounds or pump up the volume and move to the beat. Either way, it’s the healthy thing to do.



If you’ve ever swooned to a romantic ballad or felt energized by a disco beat, you know music can affect your mood. That idea is now supported by medical research. “With the arrival of PET (positron emission tomography) scans and FMRI (functional magnetic resonance imaging) that can actually watch the brain in motion, there is an exciting push for research in the brain sciences,” says Sambrano, who is also trained in neurologic music therapy.


If you are interested in a deeper exploration of the music therapy profession, Sambrano recommends these studies:

• “Elements of Pain and Music: The Aio Connection,” by J. Harish and C.T. Eagle (1988)—This article explains the parallels between music and pain and how music can be used to alter and eliminate the perception of pain.

• “Rx: Elvis,” by R. Laird and S. Beattie (1989)—This article details several case studies that showed how patients could better cope with their illness after listening to their favorite music.

• “Quantification of the Effects of Listening to Music as a Noninvasive Method of Pain Control,” by B. Whipple and N. Glynn (1992)—This study provides hard data to support using music to relieve pain.

Investigating Infections: Lupus Makes It Tough to Ward Off Illness

By Emily Wojcik


It’s no secret that infections pose a greater risk for people living with lupus. In fact, infections are the second most common major cause of illness and death for people with the disease.

Both lupus itself and some of the medications used to treat it—especially immunosuppressants such as prednisone and Cytoxan®—can leave people vulnerable to the common cold and strains of influenza and to “opportunistic infections” that occur after bacterial contact, such as pneumonia, urinary tract infections, strep throat, and thrush. Infections that develop from minor cuts and sores are also more common when there is an underlying autoimmune disease like lupus.


As winter approaches, it is important to make your health a priority, and take steps to protect yourself.


Lupus and Risk Factors

People with higher lupus disease activity, lupus kidney disease, or other related health complications are especially susceptible to infections—and it often takes them a long time to recover from their infections. This is partly because lupus causes the hyperactivity of certain immune cells, creating antibodies that are destructive to the immune system itself, says Diane L. Kamen, M.D., M.S., an assistant professor of medicine in the Division of Rheumatology at the Medical University of South Carolina.


“Treatment can get complicated as a result because you may need to take immune-suppressing medications to control your lupus,” she says, yet drugs like prednisone, azathioprine, mycophenolate mofetil, and other common immunosuppressant prescriptions can leave you vulnerable to bacteria, viruses, and other foreign agents.


Sherrie Geisler, 52, an account manager from Antioch, IL, sees a connection between her recurrent infections and lupus. It was her inability to recover from health problems over the past decade, including burning foot pain, herpes-like sores, and upper-respiratory infections, that prompted her to seek out the specialist who diagnosed her lupus.


Geisler says she was baffled and in constant pain until her diagnosis two years ago. Now taking a combination of medication and herbal supplements, she says she still gets sick but is better able to manage the symptoms.


Infection Connection

Opportunistic bacterial infections pose a special danger for people with lupus. Even small wounds take longer to heal, as Kristina Hayes discovered after a car accident in November 2011 left her with an injured toe. “It was torn up pretty badly and still hasn’t healed yet,” says Hayes, 24, a recent college graduate from Clifton, NJ. “My doctor says it’s just the lupus interfering, since the only medication I’m on is a low dose of prednisone. Every time my toe is almost healed, I get another infection.”


Hayes, who was diagnosed with lupus in 2007, notes that not only do cuts and sores take longer to heal, but she gets bronchitis, the flu, and colds more often, and more aggressively.


Steps to Staying Healthy

To help prevent such problems, Kamen recommends immunization against viruses such as influenza. She suggests people with lupus opt for nonlive vaccines and avoid live versions, which may cause complications for those with compromised immune systems. “We’re usually talking about people currently taking higher doses of prednisone or biologics,” she says, although the effect of live vaccines on people with lupus hasn’t been fully studied. “They might be safe, but we need more information.”


A healthy lifestyle is also important. “The foundation of staying healthy is to eat a good diet, cut out junk food, get enough sleep, and focus on stress management as much as possible,” Kamen says. She recommends talking to your physician about taking a daily vitamin D supplement to help counteract limited sun exposure.


Natural remedies help Geisler ward off infection. She uses vinegar to treat fungal infections on her feet and a probiotic for irritable bowel syndrome, under the supervision of her doctor. She also uses paraben-free cosmetics and body products to help reduce allergens that trigger immune response.

Early Use of Hydroxychloroquine May Protect Against Organ Damage in Lupus

June 03, 2013

People with lupus who were treated with hydroxychloroquine (HCQ), an anti-malarial drug, early after a diagnosis of lupus had less cumulative organ damage at three years after diagnosis than those who did not receive HCQ, according to a new analysis conducted by investigators at the University of Toronto and published in a recent online issue of theJournal of Rheumatology. The investigators found that the use of hydroxychloroquine early after a diagnosis of lupus is associated with less damage (as measured by an instrument that measures damage due to lupus or its treatments) and that this difference can be picked up as early as three years after diagnosis (earlier than in previous reports).


A number of papers in recent years have provided growing evidence of the beneficial effects of anti-malarial drugs, such as HCQ, to treat symptoms of lupus and prevent disease flares. However, existing studies have not focused on examining the effects of early HCQ use on organ damage. Since current evidence indicates that organ damage occurs within the first few years after the onset of lupus, it is important to identify protective factors to preserve survival, functioning, and quality of life for people with lupus.


The Toronto group first updated an earlier review of relevant medical literature to describe the existing evidence for the beneficial effects of hydroxychloroquine in lupus. They analyzed data from 47 previously published journal articles on clinical trials and observational studies involving anti-malarial drugs. While the literature review found evidence of benefits of HCQ over time, the investigators still wanted to know whether some benefits could be seen as early as three years.


The investigators conducted their own study and analyzed data from people with lupus seen at the University of Toronto Lupus Clinic and who were diagnosed with lupus within one year of enrollment between 1970 and 2009. The investigators identified, from the database, several hundred patients with a diagnosis of lupus made less than one year prior to entry into the registry.


Subsequently, the investigators narrowed their study to 151 individuals who, at three years after diagnosis, had already experienced organ damage, and then matched those individuals to an equal number of patients who after three years had no measurable organ damage. The pairs were matched by calendar year of diagnosis and disease severity. The investigators then conducted an in-depth analysis to examine multiple variables and their possible relationship to organ damage.


Their analysis found that those individuals who received HCQ with our without immunosuppressive drugs, (such as azathioprine, methotrexate, cyclophosphamide, mycophenolate mofetil, cyclosporine) or steroids, had accumulated less organ damage at year three while those who did not received HCQ were at higher risk. The investigators also found that age, as well as greater lupus activity and higher dose of steroids (considered together as one variable) were also associated with increased damage in those patients. The data suggests that the early use of HCQ had a protective effect against organ damage in people with lupus.


The investigators acknowledge there are some limitations to their analysis. However, they feel their findings provide further evidence and support for the early use of HCQ in lupus patients.


Akhavan PS, Su J, Lou W, Gladman DD, Urowitz MB, and Fortin PR. (2013). The early protective effect of hydroxychloroquine on the risk of cumulative damage in patients with systemic lupus erythematosus. Journal of Rheumatology 2013 Apr 15. [Epub ahead of print].

Women With Lupus Have a Higher Risk for Preeclampsia

ScienceDaily (Oct. 30, 2012) — New research reports that women with systemic lupus erythematosus (SLE) have a two-fold increase in risk of preeclampsia — a dangerous condition in which pregnant women develop high blood pressure (hypertension) and protein in their urine (proteinuria) after 20 weeks of gestation. According to the findings published in Arthritis Care & Research, a journal of the American College of Rheumatology (ACR), use of Disease-Modifying Antirheumatic Drugs (DMARDs) during pregnancy was rare in the study population, but women who did use these medications show a statistically non-significant increase in preeclampsia risk. The risk could be explained by the severity of autoimmune disease among DMARD users.

Patients with autoimmune diseases such as SLE and rheumatoid arthritis (RA) are typically treated with DMARDs to prevent disease flares. DMARDs are a class of medications that treat the underlying autoimmune disease, not just symptoms of these diseases, and include: methotrexate (Rheumatrex, Trexall); anti-malarial drugs such as hydroxycholorquine (Plaquenil); and biologics such as etanercept (Enbrel) or adalimumab (Humira).

“Understanding how DMARD use impacts women with autoimmune disease is important, especially during pregnancy, as previous research found that women with SLE had at least a two-fold increase in preeclampsia risk and women with RA had a two-fold increase of this severe pregnancy complication,” said lead author Kristin Palmsten from Harvard School of Public Health.

To compare risk of preeclampsia in DMARD users, researchers used the British Columbia healthcare utilization database to identify 306,831 pregnancies in 224,827 women with and without autoimmune disease. Women who filled a prescription for DMARDs, non-steroidal anti-inflammatory drugs (NSAIDs), or corticosteroids before pregnancy were considered “past users” and those who filled these prescriptions both before and during the first 20 weeks of pregnancy were designated “continuous users.”

Results show that pregnant women in this study had a median age of 30 years, with 0.3% of women diagnosed with RA or psoriasis; 0.2% with inflammatory bowel disease (IBS); 0.1% with SLE, and another 0.1% with multiple sclerosis (MS). Within this cohort, researchers found that 1,226 (0.4%) women used a DMARD in the year prior to pregnancy, while only 414 (0.1%) women used DMARDs while pregnant. The occurrence of preeclampsia in past DMARD, steroid, NSAIDs users was 2.3%, 2.7%, and 2.9%, respectively.

Further analysis indicates that a continuous DMARD user was at greater risk of preeclampsia (relative risk (RR) =2.29; not statistically significant) compared to past DMARD users. Preeclampsia risk was greater in women with SLE (RR=2.02) compared to women without an autoimmune disease. Restricting the analysis to women with autoimmune diseases weakened the preeclampsia relative risk in DMARD users.

Ms. Palmsten concludes, “Our findings uphold previous evidence, showing that women with SLE had twice the risk of developing preeclampsia. The statistically non-significant increase in preeclampsia risk found for DMARDs was reduced when we more fully accounted for the potential effect of the autoimmune diseases, suggesting that the underlying disease or severity of the disease was likely contributing to the increased risk of preeclampsia among DMARD users.” The authors advise that further studies are needed to confirm their findings, and research should focus on DMARD use and preeclampsia in women with specific autoimmune diseases.–+Lupus%29

How to Prepare for your Doctors Appointment!

In today’s managed care environment the time you spend face-to-face with your physician is limited. To get the most from your health care providers (HCPs) you’ll need to meet them halfway, and preparation is the key. If you come prepared with the details and history of your problem, anticipate questions, know your medications, and bring medical records you increase the likelihood of an accurate diagnosis. And if you are anxious about doctor appointments, good preparation will go a long way to alleviate that anxiety. The following tips can help you make the most of your appointment.

Organize your history

What is the process of diagnosis? The majority is buried in the history — a description of the problem. What “Star Trek” and “ER” fail to show is the process of sifting through that description to locate the nuggets of pertinent information. While it’s true that additional information is gleaned from the physical exam, laboratory and imaging tests, it is the history that provides direction for the investigation. The more organized your presentation, the easier it will be for your HCP to arrive at a diagnosis. Keeping a journal of your symptoms may be helpful. If you feel it might be necessary, enlist a relative or friend to help you prepare and/or accompany you to the appointment. Physicians appreciate an accurate history whether it comes from the patient or someone who clearly knows the problem. (If someone does accompany you, be sure there’s unified agreement to the story. Bickering in the exam room is counterproductive.)

In describing your problem, be specific. Telling the doctor you “feel ill” is not as helpful as, “I feel warm, ache all over, especially in my back, and I’m coughing up yellow stuff.” Give as much information as you can. If you have more than one problem, talk first about the one that worries you the most. Prepare a separate history for each problem and strive to make it clear and complete. Present them one at a time so you don’t confuse your HCP.

Anticipate what the doctor needs to know

Let’s say that, for example, you have pain. (If you have more than one type of pain you may need to describe each pain separately.) You should be prepared to answer the following questions:

Where is the pain most severe?

When did it start?

Does anything trigger it?

Is there anything you could do to bring it on, make it better, make it worse?

Is it present every day, or do you have pain free days?

Is it worst in the morning, as the day goes on, or constant?

On a scale of 1-10, how severe is the pain?

Is it constant or off and on?

Do you have any other symptoms with it, such as chest pain, shortness of breath?

Does the pain stay in one area or spread to other areas?

Does it interfere with your daily routine?

What has been its course? (Is it stable, or getting worse?)

Is this a new symptom or a recurrence of a previous problem?

These questions apply to most problems or symptoms. If you’ve thought about how you would answer them ahead of time you’ll be prepared, your response time will be shortened and this may leave more time to discuss your concerns before the end of the appointment.

Know your medications

Another aspect of preparation is knowing what medications you take. Although you may recognize your pill as “the little blue one,” there are probably hundreds of pills that are little and blue. The likelihood of your doctor being able to identify your blue pill is slim. Put ALL your medications — prescription, non-prescription, vitamins, herbs, minerals, each in its original container — in a bag and take them with you to your appointment. This way the doctor will know the medication, dosage, frequency and your need for refills. If you take medications chronically, keep an updated card in your wallet or purse with the names of the drugs, dosage and frequency. This is important if drug interactions are to be avoided. It’s not uncommon for patients to be seen by several specialists each of whom prescribes different medications. Each doctor needs to know what drugs you are taking, including those prescribed by other physicians. They assume you will be able to list all medications you currently take. If you can’t tell them, you may put yourself at risk.

Medical Records

If you have any copies of medical records from other physicians bring them with you. Also bring X-rays or MRIs with you if appropriate. If you are being referred by another physician, try to expedite the exchange of medical records. Very often, you’ll need to consent to your records being released to the new physician. Not every doctor’s office will anticipate this or contact you beforehand to arrange for the transfer of records. To make the most of the appointment, call ahead and ask how these arrangements should be made. A transfer of your records may help you avoid repeat diagnostic tests which carry their own risk and expense. Also, if you’re H.M.O. (health maintenance organization) allows a consultation with a specialist, your first visit may be your only one with that doctor, so it helps to be as prepared as possible.

Request a verbal summary

In the stressed and compressed time of a doctor’s appointment it’s very common for communication to be impaired. A recent survey of how much patients recalled following a general exam revealed that most could not remember more than of the medical problems their doctor diagnosed! Would you consult your banker, tax preparer or clergyman and leave the meeting without making sure you understood what was discussed? While many HCPs are aware of the need to restate treatment plans or medication adjustments, others may not do so. Sometimes time restrictions decrease the amount of verbal reinforcement the doctor can offer. Ask for a brief summary to make sure all points are covered and necessary prescriptions filled out. Ask what kind of follow-up is needed. Be prepared to take notes.

Questions you should ask during a visit with your HCP

What is this problem likely to be, among the possibilities?

Is further diagnostic evaluation necessary?

What can I expect from the natural course of this problem?

Is there treatment available to modify the course?

How long before I should see the effects of the medication?

Under what circumstances should I notify the doctor?

If your expectation is that all you have to do is show up for an appointment and the doctor will do the rest, your visit is likely to be a frustrating one, and you may put yourself at risk for misdiagnosis. Remember, unlike “Bones,” your doctors don’t have scanners they can pull out of their pockets to miraculously diagnose your problem. They need your help. The doctor’s appointment is your opportunity to discuss medical problems and concerns. By preparing for the appointment you will be less likely to waste the opportunity, and more likely to gain a degree of satisfaction from the visit.