It has been a while that i have spent time writing for all my Lupus Community and others who enjoy visiting my blog! My apologies but Life happened. Many great things happened, but at the same time I’m here at … Continue reading
I will be updating info as soon as the website for registration is available!!! I will be there for sure. so if you are in the Los Angeles or Inland Empire along with all surrounding cities #Please join us this May 10, 2014.
Good communication between you and your doctor is essential to ensure effective management of the medicines that are prescribed. Medications used to treat lupus range in strength from mild to extremely strong, and often several drugs are used in combination to control the disease. However, all medications have side effects that need to be monitored. In some cases, the medicines you take for lupus can cause side effects that require additional medications. Your physician needs to know of any and all side effects that occur, as changes in dosage or medication may be required.
An effective way to keep track of a complex disease like lupus is with a daily medical diary or journal. This can be kept by you, or by a trusted family member or friend who can go with you to your doctor appointments. Details about medications, such as dosage and possible side effects, can be recorded, as well as questions to ask at your next appointment.
As medications are prescribed, your doctor or pharmacist should provide answers to the following questions, and you should keep the answers in your medical journal.
Why is the doctor prescribing this medication?
What is the name of the medication, both brand and generic? (for example, Plaquenil / hydroxychloroquine)
What should the medication look like? (pill, capsule, cream, liquid, injection, etc.)
Is it okay to substitute a generic version?
What is the best time of day to take the medication?
How should it be taken? (with food, water, milk, on an empty stomach, etc.)
What is the dosage being prescribed?
How often should it be taken? (several times per day, once a day, weekly, etc.)
What are the side effects, both common and unusual?
When should the doctor be called about any side effects?
How long will it take for the medicine to work?
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Be part of the Lupus Foundation of America’s Walk to End Lupus Now™ event in your community and help us take steps to raise money for lupus research and education programs while increasing awareness of lupus and rallying public support for those who suffer from it.
Apr 9, 2012 | By Ireland Wolfe
Lupus is a chronic disease in which your autoimmune system begins to attack healthy tissue. Lupus can affect different organs, including the skin, kidneys, brain and lungs. Many people with lupus have joint pain, and some will develop arthritis. The most common joints affected are the fingers, hands, wrists and knees. Common symptoms include chest pain, general discomfort, fatigue, fever, skin rash and swollen lymph nodes. Other symptoms can depend on the part of your body lupus is affecting.
Tomatoes and Inflammation
Nightshade vegetables include eggplants, white potatoes, peppers and tomatoes. Dr. Norman F. Childers, author of “Childers Diet That Stops Arthritis,” founded the Arthritis Nightshades Research Foundation in 1980. He has suggested that these types of vegetables increase inflammation in the body, causing an increase in symptoms in people with lupus. Dr. Childers reported he would experience achy knees after eating nightshade vegetables. When he stopped eating these foods, his pain disappeared. However, no scientific research has backed up his claims.
The Lupus Foundation of America recommends keeping a journal to track food consumption and flare-ups of symptoms. If you notice a correlation between a certain food, such as tomatoes, and your lupus symptoms on multiple occasions, consider eliminating that food from your diet. Eating a healthy diet with grains, fish and vegetables can help reduce inflammation in your joints. Fish high in omega-3 fatty acids can be especially important for people with lupus. Omega-3 fatty acids not only help to reduce inflammation but also to protect you from heart disease, which is more common in people in lupus.
Talk to your physician if you are concerned about your diet with lupus. Although scientific evidence does not suggest diet affects lupus, some people are more sensitive to certain foods or may have food sensitivities. The only food that people with lupus should avoid is alfalfa. The amino acid L-canavanine, found in alfalfa, activates the immune system and cause lupus flare-ups. You might also want to reduce your sodium and fat intake to minimize fluid retention and high cholesterol, possible side effects of corticosteroids, which are often prescribed to treat 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].
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.
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.
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.
Is it not crazy when you feel like you’re Superwoman & feel like you can conquer the world? I think to myself, why can’t I always feel this way? There are those very special days when I wake up and begin my day with so much energy and enthusiasm that I try to do it all until my body can no longer take it. Just recently I actually had a couple of good days until I literally crashed and slept for 12 hours straight and was still sick & exhausted.
It is such a terrible reality that hits me after feeling so well that I cant just keep going anymore. As those great days pass me by I sometimes feel like, “God can I actually be cured now bc I dont feel like I have any illness?”, but there comes great old reality and answers that for me! I wish I can go back in time and remember what it was like not having to take so many darn pills and have my body feel strong and not so exhausted all the time. Well, I can’t complain forever so thats enough of my pain bc i will exhaust you all as well, lol.
Gaining Perspective: Small, consistent efforts can help you manage the weighty side effects of prednisone.
by Martha J. Frase (Summer ’08)
Prednisone is the drug you love to hate. The side effects of this powerful corticosteroid are dreaded — rapid weight gain, hunger, hair loss, fluid retention, and the characteristic swollen “moon face.” But for people with lupus, it is, for now, their best defense against serious organ damage.
“When you’re flaring and feel crummy, or an organ is threatened, you want a quick response,” says Rosalind Ramsey-Goldman, M.D., a rheumatologist and professor of medicine at Northwestern University’s Feinberg School of Medicine in Chicago. “It’s like killing an ant with a sledgehammer, but until we get better targeted therapies, we are limited by what we have available.”
Still, many people with lupus are troubled by fears of weight gain. “This is always a major topic of conversation in my support group,” says Mary Beth Goehl, 48, of Crystal City, MO, who has battled her lupus for almost 30 years. Although she knows of women who resist taking steroids, she is not one of them: “I eventually came to the realization that I have earned this weight through the hardships I have gone through. This is my life. This is how I am. I wish I could get every woman to feel that way.”
“Patients simply do not like the way their bodies look,” says Ramsey-Goldman, but she assures people that as the dose is reduced, the weight does come off.
“Some doctors will tell you that you need to be on prednisone, but won’t address the weight gain, hair loss, and moon face, and how that affects someone,” says Carla Ulbrich, a 40-year-old musician and songwriter in Somerset, NJ, whose lupus affects all of her major organs. “That can be frustrating.” Still, having undergone three major flares that were controlled with high doses of prednisone, she says she knows the treatment is effective. “My approach is to take the medicine, get it over with, and get off it as soon as you can. The longer you wait to start taking it, the sicker you’ll get.”
Ramsey-Goldman agrees wholeheartedly. “Doctors know that if the organ is damaged, we can’t get it back. So the goal is to get the flare-up under control, then taper off the steroid dose. Everyone believes in less prednisone.”
Since Goehl may need to be on a maintenance dose of prednisone for the rest of her life, she focuses on small efforts to fight weight gain every day. “You have to feed your body to keep the metabolism going,” she says, “so I eat small, low-calorie snacks, so I always have something in my stomach.”
Ulbrich swears by her gluten-free diet. Although she knows it is not the best option for everyone, and should be used under a doctor’s care, she finds it staves off bloating for her. “I can now buy all kinds of gluten-free products — even cookies and bread. This wasn’t the case a few years ago. I also avoid bingeing on salt and sugar. I’ve quit drinking soda, and I eat a ‘whole foods’ diet with lots of fruits, veggies, beans, and oatmeal.”
Getting enough exercise is also a good way to help maintain your ideal weight. Rheumatologists recommend general conditioning activities for people with lupus — like walking, swimming, low-impact aerobics, and bicycling. Small, consistent efforts can make the difference, says Ramsey-Goldman. “Even if you only walk for 10 minutes a couple of times a day, you are burning calories, strengthening muscles, and counterbalancing the bone-losing effects of steroids.” Of course, any exercise program should be supervised by your physician.
Ulbrich puts it this way: “You have to start where you are.” After suffering a stroke, she was barely walking with a cane at first. “I started regaining my strength in the pool. When I did start walking, I set small goals: walk three minutes today, then four minutes tomorrow.” Now recovered from the effects of the stroke, she has to be careful about pushing her fitness routine too hard: “In fact, vigorous exercise was part of the stress that led to my last flare, so I am trying to be sensible, which is not easy when you want to lose weight. I am carefully working my way up to 30 minutes of activity at a pace that makes me break a sweat and improves my cardio system. I do lots of repetitions of lifting very light weights, to get the benefits without major stress on my system. And I always stretch!”
Alongside diet and exercise, emotional support is key to countering the effects of prednisone. “Depression and anxiety can be big problems for people who take steroids,” cautions Ramsey-Goldman. “Behavioral therapy and group support are important. You need to maintain a feeling of empowerment, so you don’t feel you are being taken over by a disease or a drug — it’s very hard to do this alone.”
Goehl has found that her hobbies keep her active and engaged. “I love gardening and bird watching, and even during a flare I can still get motivated to walk out to my bird feeder and fill it. Find something you enjoy that helps you pull those inner reserves up when you need them,” she says. And try to keep your attitude about prednisone realistic, she advises. “If I didn’t have this drug, I wouldn’t be alive, so to women who resist it, I say, ‘never say never.’ Just remember that the weight will come down when the dose comes down. It’s only temporary.”