It is always a little nerve-wracking when you are about to see your new Rheumatologist. I even have a bit of anxiety since my appointment is tomorrow morning. Knowing that I have to list my symptoms, length of time, rate the pain I … Continue reading
Went in to the hospital Friday night and came out Saturday morning with this bad baby😳🙄 I went to Urgent Care due to seizures bc of my #lupusflare 😷🤦🏻♀️ i have been sleeping a lot, trying to get my energy … Continue reading
For a few years now I thought I was having some sort of tremors or shaking of my head and then realized they were awake seizures…not too serious I thought! Have you ever had that? I just thought maybe I … Continue reading
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- A fibromyalgia flare (or flare-up) is a temporary increase in the number and/or intensity of symptoms. Worsening pain and fatigue are generally the first two symptoms noticed in a fibro-flare. But other symtpoms like poor sleep, increased cognitive dysfunction and digestive disturbances are often experienced as well.
Some flares only last for a day or two but others may continue for several weeks or even months. It’s those long flares that are the hardest to deal with because it feels like they will never end. When you start to feel discouraged in the midst of a long flare, it’s important to remind yourself that flares are temporary. They will eventually begin to subside.
The best way to prevent FM flares is to identify what causes them and when possible, try to avoid the circumstances that trigger them. Keep in mind that a flare may not occur for up to 48 hours after the event that triggered it.
Causes of Fibromyalgia Flares
In my experience, 10 of the most common causes for fibromyalgia flares are:
1. Weather changes
Possibly the most common cause of short-term fibro-flares can be attributed to changes in the weather. Whenever the barometric pressure changes and a new front passes through, many people with FM experience an increase in their symptoms – particularly in their pain level. Fortunately, these flares usually only last for a day or two.
Any time we push ourselves too far physically, we’re in danger of triggering a flare. On those rare days when we feel pretty good, it’s so hard not to try to catch up with all of the chores and activities we’ve been unable to do for the past month or two. But overdoing, even when you feel good, will usually come back and bite you in the form of a fibro-flare. It’s better to increase your activity level gradually so that hopefully you’ll have more good days with fewer setbacks.
Stress may be the granddaddy of fibro-flare triggers. We’re always hearing how prolonged stress negatively affects our health and can lead to heart attacks and strokes. What we don’t always realize is that stress can have a significant impact on fibromyalgia symptoms as well.
Stress can be a particularly insidious culprit when it comes to fibro-flare triggers because it often sneaks up on us. Our responsibilities gradually increase, the economy gets worse, our child gets sick – without consciously thinking about it our stress levels have gone through the roof. Then one day we find ourselves in the midst of a major flare and wonder what caused it. It’s been my experience that stress-related flares often last the longest because they can be the most difficult to identify and then find ways by which we can manage the stress.
4. Illness or injury
Just as an illness or injury often triggers the onset of fibromyalgia, another illness or injury can trigger a flare of FM symptoms. Even something as simple as the common cold can result in a fibro-flare.
5. Hormonal changes
A number of women report experiencing FM flares related to their menstrual cycles and menopause. Whether or not hormone replacement therapy is appropriate or even would be helpful in these cases is something that each individual would have to discuss with her doctor.
6. Temperature changes
Many people with FM find that they are extremely sensitive to cold or heat or both. Being exposed to those uncomfortable temperatures, even for relatively short periods of time, can sometimes trigger a flare.
7. Lack of sleep or changes in sleep routine
Getting quality, restful, restorative sleep is an ongoing challenge for people with fibromyalgia. Whenever that sleep is disrupted or there are changes to an individual’s normal sleep patterns – particularly over a period of time – a fibro-flare may not be far behind. It’s important to find a sleep routine that works for you and stick to it as closely as you can.
8. Treatment changes
While changes to your medications or other treatment protocols are intended to bring about an improvement in your symptoms, sometimes those changes can result in a flare of your symptoms. It can be tricky to determine whether the flare was actually caused by the change itself or was coincidental. It may take a period of trial and error, working with your doctor, to figure out whether the treatment change is to blame or if some other factor triggered the flare.
Traveling is seldom easy for someone with fibromyalgia and even the best trip may be followed by a fibro-flare. One reason this happens I suspect is because travel so often involves one or more other common flare triggers such as weather changes, temperature changes, stress and the disruption of sleep routines. Try to plan plenty of rest time during your trip as well as allowing a day before you leave and at least a day or two after you return to rest. While this may not completely prevent a flare, it may help minimize its severity.
10. Individual sensitivities
Often people with fibromyalgia have a number of sensitivities such as allergies or sensitivity to light, noise and/or smells. Exposure to the things they are sensitive to – like bright lights or strong perfumes – may trigger a fibro-flare.
Preventing Fibromyalgia Flares
Although it’s not possible to prevent all fibro-flares, identifying what causes most of your flares and taking steps to try to prevent those triggers can help reduce the number and intensity of flares significantly.
Journaling or keeping a log is an excellent way of identifying possible triggers because you can go back and compare what you did prior to a current flare with other previous flares. Just take a few minutes each day to jot down your activities for the day, any new medications or other therapies started, changes to your diet, weather or temperature changes, how and when you slept – anything that could help you pinpoint changes or themes that could account for your flares.
Incidence of and risk factors for adverse cardiovascular events among patients with systemic lupus erythematosus
Magder LS and Petri M. American Journal of Epidemiology. 2012. Sept 27. doi: 10.1093/aje/kws130. [Epub ahead of print]
What is the topic?
Individuals with lupus are at increased risk of heart disease. However, it is unclear whether this increased risk is mediated by traditional risk factors (smoking, gender, and age, for example), or factors related to the disease itself or its current or past treatments.
What did the researchers hope to learn?
The researchers hoped to learn which of the above risk factors for heart disease in lupus is most influential.
Who was studied?
Over 1,800 individuals who were enrolled in the Hopkins Lupus Cohort from April 1987 to June 2010 were eligible for inclusion in the study. Patients who had a heart disease-related event prior to entry into the Hopkins Lupus Cohort were excluded from the analysis.
How was the study conducted?
Upon enrollment in the study, the participants underwent a comprehensive evaluation of medical history, including date of lupus diagnosis, and information about drug treatments and prior heart disease-related events. During quarterly clinic visits, participants underwent a battery of physical and laboratory tests, including measurement of the following: complement, anti-double-stranded DNA (anti-dsDNA) antibodies, lupus disease activity, and at least one additional immunological marker related to lupus (including anti-Smith antibodies, anti-ribonucleoprotein antibodies, anti-Ro, anti-La, and anti-phospholipid antibodies).
Heart disease-related events were defined to include the following: myocardial infarction (heart attack), thrombotic stroke (blood clot in a brain artery), angina (chest pain), percutaneous coronary intervention (angioplasty), a coronary bypass procedure (surgical correction of coronary artery disease), or claudication (pain during exercise).
Lupus disease activity was assessed with use of the Safety of Estrogens in Lupus Erythematosus National Assessment (SELENA)-Systemic Lupus Erythematosus Disease Activity Index (SLEDAI), a modified version of the SLEDAI.
What did the researchers find?
Of the 1,874 patients eligible for the study, 95% fulfilled four or more of the American College of Rheumatology Classification Criteria for systemic lupus erythematosus. Most of them (93%) were women, and most were either Caucasian (56%) or African-American (37%). The patients were, on average, 37 years old and many joined the Hopkins Lupus Cohort within one (39%) to five years (27%) of lupus diagnosis. The follow-up period was 1-10+ years, and most (85%) of the clinic visits were within 115 days of the previous visit. Therefore, 80% of the measurements included in the analysis were made within the previous three months or less.
There were 134 incidents of heart disease-related events in these patients; these included 65 strokes, 27 myocardial infarctions, 29 cases of angina or coronary artery procedures, and 13 cases of claudication. Among the patients for whom heart disease-related risk factor information was available (62%), 109 incidences of heart disease-related events were observed. This was substantially higher than what would be expected in the general population.
The number of heart disease-related events increased significantly with age, and was especially more common among those aged 50 years and older. Heart disease-related events were significantly more common among men, and those with increased average systolic blood pressure, elevated average cholesterol levels, and those having diabetes mellitus. Even after accounting for the increased risk due to increased lupus disease activity, and increased blood pressure and cholesterol, patients currently taking steroids at a dose of 20 mg/day or more had significantly more heart disease-related events. Also at increased risk were those with significantly increased average past levels of lupus disease activity and elevated recent levels of anti-ds DNA antibodies.
Overall, body mass index made no significant difference in the risk of heart disease-related events. After adjustment for age, there was no significant association between the incidence of heart disease-related events and any of the following: duration of lupus disease, age at lupus diagnosis, average lupus disease activity, history of skin or musculoskeletal involvement, or history of immunological involvement (anti-dsDNA antibodies, anti-Smith, anti-Ro, anti-La, or anti-ribonucleoprotein antibodies, or low complement).
What were the limitations of the study?
First, clinical variables (such as blood pressure and lupus disease activity) were only assessed quarterly, so some variables included in the analysis may not reflect current values. Second, some patients missed quarterly visits, so some data included in the analysis did not reflect the most recent measurement of clinical variables. Third, some autoantibodies were only measured once during cohort participation, so information about them is limited.
What do the results mean for you?
The results suggest that the current dose of steroids taken, rather than the cumulative dose, is perhaps the most critical factor in determining the risk of heart disease-related events in individuals with lupus. This suggests that the short-term impact of steroid use on heart disease risk is relatively more important than the history of steroids taken in the past.
This article was posted on NOV. 08, 2012, but the information is still great to know! Thanks for reading and the link is below for more info:
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 😀
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?
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 youtube.com.)
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 www.health.state.ny.us//diseases/aids/docs/9388.pdf, and the National Heart, Lung, and Blood Institute’s “Tips” page at www.nhlbi.nih.gov/hbp/treat/tips.htm.
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.
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.