flare – LupusCorner https://lupuscorner.com Health Info on Lupus Symptoms, Treatments & Research Thu, 20 Feb 2020 20:00:59 +0000 en-US hourly 1 https://wordpress.org/?v=6.2.4 https://lupuscorner.com/wp-content/uploads/2019/07/cropped-lupuscorner-new-profLogo-nobg-32x32.png flare – LupusCorner https://lupuscorner.com 32 32 Lupus Flares: Is There Such a Thing as Normal? https://lupuscorner.com/lupus-flares-such-a-thing-normal/ https://lupuscorner.com/lupus-flares-such-a-thing-normal/#comments Mon, 11 Mar 2019 21:49:48 +0000 https://lupus-appli-1kjf77zfuvjpc-635402343.us-east-1.elb.amazonaws.com/?p=1328 The post Lupus Flares: Is There Such a Thing as Normal? appeared first on LupusCorner.

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It’s normal to fear the unexpected, and what’s more unexpected than lupus flares? Check out statistics and insights from Lupus Warriors.

You follow the standard advice on how to avoid a disease flare:

But, it seems like the list of things to avoid is getting longer and longer. The Johns Hopkins Lupus Center list of things to avoid to stave off lupus flares even added some new ones including:

  • garlic
  • alfalfa sprouts
  • echinacea
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How long does a usual flare last?

There is not good research into how long lupus flares last and browsing patient communities can cloud things even further. To try and help with this, we conducted a survey of visitors to this site. Thus far, over 2,700 people have participated in the poll! ?

How long does your typical lupus flare last?

Nearly 63% of people reported flares that last one week or less. Of that group, almost 75% of people experienced flares lasting between two and 6 six days. Typical flares of two weeks were reported by over 1/4 of poll participants.

Typical Lupus Flare Duration

  • 1 Day
  • 2-3 Days
  • 4-6 Days
  • 1 Week
  • 2 Weeks
  • Other

In many ways, it is hard to read too much into these results because there was such an equal distribution of responses among the choices. If anything, it suggests that the concept of typical lupus flares may not exist. This sentiment was expressed by many of the people that chose to write in responses. Nearly 10% of people reported that their flares lasted a different duration than the available choices.

Of the 268 write-in answers, there were numerous responses that a typical flare lasts months, entire seasons (like the whole summer), or even years. Below are some excerpts of the answers given on lupus flares:

“My flares are never typical…so it’s random…the past 4 months I’ve been in a flare that ramps up”

woman-lupus-relationships

“I have had them last up to a month and other times only a week or so.”

woman-lupus-relationships

“I have lupus symptoms everyday. Somedays I feel almost normal, other days…”

man-lupus-share-your-story-relationship

“Unsure. Not sure I have ever stopped flaring”

With lupus flares, atypical is the norm

In looking at our survey results, it’s hard for people to tell how long a flare will last. Part of that difficulty comes from understanding exactly what a lupus flare is. There are infographics on the internet and top 10 lists of lupus flare signs, many of which are aspects of measurable disease activity scales. But, as Dr. Jamal Mikdashi and Dr. Ola Nived wrote in their 2015 article:

Measuring lupus disease activity accurately remains a challenging and demanding task given the complex multi-system nature of lupus, an illness known for its variability between patients and within the same patient over time.

Researchers work to find truly equatable measures of disease activity to help make comparisons of treatment effectiveness. And, these measures can then be defined as “end points” for clinical trials – which are clearly defined clinical goals.

Clearly, lupus flares are complicated and diverse in nature and per person. For insights from top lupus bloggers into some effective strategies for coping with flares, see our article on Managing Lupus Flares.

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Predicting a Lupus Flare – Can it be Done? https://lupuscorner.com/predicting-a-lupus-flare-can-it-be-done/ https://lupuscorner.com/predicting-a-lupus-flare-can-it-be-done/#comments Mon, 13 Nov 2017 21:59:47 +0000 https://lupus-appli-1kjf77zfuvjpc-635402343.us-east-1.elb.amazonaws.com/?p=2126 The post Predicting a Lupus Flare – Can it be Done? appeared first on LupusCorner.

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Headed towards a lupus flare? New research into predictive biological markers may hold the answer.

Lupus symptoms can come and go depending on the activity of the disease. When symptoms are light, or not present, lupus is in quiescence (or “remission”); when enough symptoms are present, it is called a lupus flare.

There are many ways to measure lupus activity, but the two most commonly used in research are:

  1. Safety of Estrogen in Lupus Erythematosus National Assessment-Systemic Lupus Erythematosus Disease Activity Index
    • Also known as: SELENA-SLEDAI
    • Increase of 3-11 points indicates a moderate lupus flare
    • Increases greater than 12 points indicates a severe lupus flare
  2. British Isles Lupus Assessment Group disease activity index (BILAG)

These scales both attempt to define a lupus flare as a result of specific symptoms. Because it is difficult to predict a lupus flare, many research studies look at the medical history of participants along with a measure of disease activity to determine if a person is experiencing a flare.

Looking for tips & tricks for managing a flare? Check out insights from 3 top lupus bloggers!

lupus flare-lupuscorner-predictive-biomarkers-divider1

Do certain symptoms seem to come on before you go into a full-on lupus flare? Share your experiences and learn from other Lupus Warriors. Click below!

Predicting a flare – sticking to the treatment plan

Your lupus treatment team has worked to put together a treatment plan that keeps lupus symptoms at bay. A major part of this is taking medications as prescribed.

Anti-malarial drugs, such as Plaquenil, are particularly important when it comes to managing lupus flares. Some days, it can seem like the side effects and complicated dosing instructions for medications are more trouble than they are worth. But, according the John’s Hopkins Lupus Center, anti-malarial medications “may help reduce flares by as much as 50%.”

In addition to sticking to your treatment plan, it is important to track your symptoms. A 2013 study conducted by Dr. Michelle A. Petri of Johns Hopkins found that kidney involvement (renal problems) was linked to a doubling of the 1-year risk of having a lupus flare.

There is also empirical evidence suggesting that the following strategies can help minimize flares:

  • Avoiding ultraviolet (UV) light
  • Managing stress and anxiety
  • Eating a healthy diet
  • Exercising
  • Getting enough physical and emotional rest
lupus flare-lupuscorner-predictive-biomarkers-divider2

Advanced predictors of a lupus flare

New research is exploring “biomarkers” as a potential indicator for lupus flares. A biomarker is something that can be measured or identified in a person (or other organism) that indicates the presence of a disease or infection.

Some examples of biomarkers that have been explored for a connection to lupus flares includes:

  • Anti-double-stranded DNA antibodies (anti-dsDNA)
  • Complement or complement split products (examples include: C3, C4, & CH50)
  • Anti-C1q antibodies
  • Anti-nuclear antibodies (examples include: Anti-Sm ab, ANA)
  • Cytokines or chemokines (examples include: BAFF/BLyS, IL-2R)

A review published in October 2017 looked into 69 studies previously conducted on flare biomarkers. Despite many studies having positive results across a number of biomarkers, the researchers concluded that, “none of the newly studied biomarkers stood out,” and that “none of these biological markers is completely reliable in diagnosing exacerbations.”

The researchers acknowledge many of the challenges in comparing these studies, including the lack of data standardization. There was hope in the review that some of the antibodies researched could be useful following additional study.

Unfortunately, at this time, there is no gold standard for predicting or identifying a symptom flare. But, biologic research of this type is quite promising.

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Lupus Flare? Get Management Advice From Experts https://lupuscorner.com/managing-lupus-flare-advice-experts/ https://lupuscorner.com/managing-lupus-flare-advice-experts/#comments Fri, 02 Dec 2016 21:02:52 +0000 https://lupus-appli-1kjf77zfuvjpc-635402343.us-east-1.elb.amazonaws.com/?p=1097 The post Lupus Flare? Get Management Advice From Experts appeared first on LupusCorner.

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A lupus flare can be frustrating and frightening. Experts share their thoughts on how to best take on lupus (while managing your life).

The onset of symptoms, ranging from rashes and fatigue to serious joint pain and risk of organ damage, can seem unmanageable. A lupus flare contrast periods of time with no symptoms – known as remissions, or more accurately “quiescence.” While a severe lupus flare requires immediate medical attention, a mild or moderate lupus flare can be managed at home.

LupusCorner gathered insights from some top patient advocates and experts about a lupus flare

When you are in the middle of a lupus flare, what can you do to manage the symptoms?

Sara Gorman DespiteLupus

“During a flare, prioritize your activities, and scale back on anything that doesn’t make the top of the list. Remember – this isn’t permanent! This is just until your disease activity lessens and you are flare free. Focus on today, and delegate what you can. You’d be surprised how many people are willing to help, if you task them with something specific.”

Marisa Zeppieri LupusChick.com

“In the middle of a flare, I concentrate on sleeping as much as realistically possible with the demands of life, focus on ramping up my intake of healing foods such as bone broth, probiotics, and anti-inflammatory food. I also try to keep a journal to keep track of everyday. And most of all, though it is hard, I try not to stress. I keep in mind that I have been through awful flares before and they have resolved in time. This helps keep my stress levels in check.”

MarlaJan Wexler LuckFupus.com

The most important thing during a flare is to listen to your body; if your body is telling you to rest, then it is critical to give your body the rest it needs so you can recover. Pushing yourself makes the symptoms more prominent, and the flare will last longer.”

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