Monday, 8 May 2017

Flare Ups: The Lupus Firestorm

Despite our best efforts to keep the lupus monster at bay, and through no fault of our own, our immune systems will rebel and we will suffer with flare ups.  

During a flare up, I suffer with extreme joint and muscle pain, low-grade fever, swollen joints, violent migraines, severe fatigue, depression and anxiety. Additionally, I may suffer with weakness in my legs, muscle cramps, rashes, ulcers, protein in my urine, sweats, cognitive dysfunction, and my cheeks will light up with a burning, raised, red rash (the butterfly rash). It makes me feel pretty miserable, especially with the excruciating pain in my knee joints, which makes me feel like I've been knee-capped. The overwhelming fatigue of the flare up keeps me in bed for days. The pain keeps me awake, so despite the exhaustion and bed rest, I barely sleep. 

It is worth pointing out that compared to others, my flare ups are mild; many of my lupus friends suffer with severe organ damage and other life-threatening flare up complications. Some of my friends have died from flare ups. I do not wish to be alarmist, but the reality for many with lupus isn't pretty and I don't want to give the wrong impression that lupus is a mild disease. I say this because some lupus websites downplay the seriousness of lupus to avoid causing distress. what exactly is a 'flare up?' 

A flare up can be defined as the "worsening of lupus symptoms over a time period". Flare ups are unpredictable and may last from anything from a few days to several years. Flare ups vary from mild to moderate, to severe and life-threatening. Each flare up is different and it is hard to predict their course. During flare ups, you may suffer with similar symptoms to those of previous flare ups, or there may be new symptoms and different variations of symptoms each time. Some of the most common symptoms of flare ups may include new or worsening:

  • Joint and muscle pain
  • Swelling of joints and other body tissue
  • Hair loss
  • Oral and/or nasal ulcers
  • Skin rashes, especially the malar 'butterfly' rash
  • Extreme fatigue
  • Lupus Arthritis 
  • Chest pain
  • Fevers
  • Neurological issues
  • Swollen glands
  • Depression
  • High blood pressure
  • Organ problems
  • Sun sensitivity
  • Migraines

What causes flare ups?

It is not known what exactly causes lupus itself, but it is thought to be caused by a combination of genetic and environmental factors. However, we do know about some of the things that can trigger a flare up. 
There are many possible triggers for flare ups as every lupus patient is different, but some of the most common triggers have been identified as (per the Lupus Foundation of America)*: 

  • ultraviolet rays from the sun
  • ultraviolet rays from fluorescent light bulbs
  • sulfa drugs, which make a person more sensitive to the sun, such as: Bactrim® and Septra® (trimethoprim-sulfamethoxazole); sulfisoxazole (Gantrisin®); tolbutamide (Orinase®); sulfasalazine (Azulfidine®); diuretics
  • sun-sensitizing tetracycline drugs such as minocycline (Minocin®)
  • penicillin or other antibiotic drugs such as: amoxicillin (Amoxil®); ampicillin (Ampicillin Sodium ADD-Vantage®); cloxacillin (Cloxapen®)
  • an infection
  • a cold or a viral illness
  • exhaustion
  • an injury
  • emotional stress, such as a divorce, illness, death in the family, or other life complications
  • anything that causes stress to the body, such as surgery, physical harm, pregnancy, or giving birth

Flare ups vary from mild to moderate, to severe and life-threatening. Each flare up is different and it is hard to predict their course. Remember that lupus can affect almost any area of your body. It is important to report any new symptoms to your lupus doctor so you can get treated for your lupus flare quickly.

Another thing to remember is that every lupus patient is different and likewise, every lupus patient will have different symptoms and triggers. It is not possible to predict when flare ups will occur, and how long they will last. Some people may get frequent flare ups, others may have fewer but longer flare ups; or some may have long remission periods with very few flare ups in their life time. But as the rule of thumb goes, every lupus patient is different, and so flare ups vary depending on each patient. 

However, it may be possible to spot early warning signs that can lead to a flare. Everyday Health says:
If you have lupus you should be aware of the signs or symptoms that can indicate when a flare may be starting. Some common warnings of a flare are:
  • Becoming overtired or feeling as though your stress level is building up.
  • Having more frequent or higher fevers than usual.
  • Aching in your muscles, or more painful and swollen joints.
  • The development of a rash.
  • The development of any symptoms you have not had before.

If you spot these early warning signs, try to take steps to alleviate some of the signs e.g. if you're feeling more tired than usual, take more rest, or if your stress levels are building up, take some time to relax until the stress passes. While we cannot prevent flares, we can take steps to reduce it's impact (though this is easier said than done!). It would also be a good idea to inform your healthcare provider so that they can monitor your symptoms and and take any relevant action that is required.

Depending on the severity of the flare up and how it affects you, the treatments used may vary in options and dosage. For example, a flare up may be treated by increasing the dosage of steroids you're currently taking, or it may require more drastic options like IV steroids. Everyone is different and as every flare up is different, the doctor will tailor the appropriate treatment to your needs.

Typical medications used for lupus include steroids, NSAIDs, immune suppression, biologics or anti-malarials. The doctor may choose one, or a combination of several medications to treat your flare up. 
There are also self-help recommendations which may help reduce the frequency or severity of flare ups. But again, please remember that every lupus patient is different, and what works for one, may not work for another, and vice versa. 

Molly's Fund Fighting Lupus say that "It is important to report any of these with your medical caregiver as soon as possible so that they can quickly assess and treat any symptoms that could signal a flare. Keeping a daily symptom journal can be a helpful tool." Molly's Fund Fighting Lupus also adds that "If you suspect that you are having a flare, please contact your physician immediately so that any adjustments to your treatment plan and medications can be made."

A Note About Sunlight

UV light, such as from the sun, or sunbeds, are known to trigger flare ups of lupus in many patients. Arthritis Research UK have the following recommendations for protecting yourself from sunlight: 

Keep out of the midday sun and wear a hat.

Cover your skin [with protective clothing e.g. long sleeves etc] or use a sun-blocking cream, SPF 50 or greater. This is available on prescription for people with lupus. You can also buy tinted high-factor sun creams that can be used as foundation make-up. 

Avoid sitting under sun umbrellas on a paved area because the sunlight will be reflected onto your face.

A Note About Stress

Science Daily report that daily stress "is very common in patients suffering from lupus. Apart from the usual circumstances which produce anxiety in a healthy population, other effects include knowing that your body suffers from a chronic disease which is controllable but incurable and of uncertain prognosis that requires chronic treatment (in some cases for the rest of their life) and which have important secondary effects". Treating daily stress, "together with the usual pharmacological treatment, is a useful weapon when treating patients suffering from lupus" ***