What is Lupus?

WHAT IS LUPUS?
Systemic Lupus Erythematosus (SLE) or simply “lupus” is a condition that can cause inflammation in many different parts of the body. It affects people in different ways causing symptoms in different parts of the body – joints, kidneys, skin, heart, lungs and nervous system. Usually 2 to 3 parts of the body may be affected.

There is nothing you could have done to stop yourself from getting lupus. You cannot catch lupus from other people or give it to others.

Lupus is an illness that may go on for years, or for your entire life. It is unpredictable with times when your symptoms are worse (we call this a “flare”) and at other times when you may have few or no symptoms.

WHAT CAUSES LUPUS?
We don’t know what causes lupus but we do know that it involves the immune system. Our body uses the immune system to protect itself from harmful things such as bacteria and viruses (bugs).

We are not sure why some people have an immune system that does not work properly. However, we do know that when some people get sick, it is caused by the system being overly active and causing harm to itself. This is called autoimmune illness. Lupus is one of these illnesses.

Females are more likely to get lupus than males, approximately in a 9 to 1 ratio. Sometimes, there is family history of lupus or other autoimmune conditions.

WHAT ARE THE SYMPTOMS?
Lupus can be hard to diagnose as there are a lot of different symptoms that people may have. You probably won’t experience all of them, most people only have some. You generally need to have 4 or more specific symptoms to be diagnosed with lupus.

The usual symptoms are a butterfly shaped rash,photosensitivity (sunlight and lights can cause rash), fever, kidney problems, fits/seizures, fatigue and tiredness, headaches, hair loss, mouth ulcers, shortness of breath, painful or swollen joints, chest pain and memory loss.

Symptoms can change over years and can come and go.

You may have periods of symptom flare up and periods of wellness.

HOW IS IT DIAGNOSED?
Go and see your doctor. He or she will take a history of your problems and symptoms which can give clues to your condition. It is not uncommon for people to have lupus and its symptoms for sometime before they get a diagnosis. Your doctor will do a physical examination and order some tests (blood and urine tests usually) to help decide whether you have lupus and to see if your immune system is working properly or is overly active.

If you do have lupus, regular blood tests will be done by your doctor to monitor your illness and keep you healthy.

If you are being seen by a GP (General Practitioner), he will refer you to a specialist. Lupus involves different types of care because it affects any organ in the body. The symptoms you have show what parts of the body are affected and need special attention. A Rheumatologist is the primary doctor who is specialized in treating autoimmune diseases, including lupus. He will occasionally work together with other types of specialists as he sees it fit, according to your symptoms, like a nephrologist (for kidneys), a dermatologist (for skin), a neurologist (for the brain, spinal cord and nerves), a cardiologist (for the heart), a pulmonologist (for lungs), an endocrinologist (for hormones and metabolism) and a gastroenterologist (for the stomach, liver and intestines).

HOW IS IT TREATED?
Everybody has different symptoms so your treatment will be based on your symptoms and problems. Your doctor (Rheumatologist) can explain which ones can help you.

The most commonly used drug is Prednisone. This is usually given to you at a high dose when you are first diagnosed and maybe to help you when you have a flare. The dose is gradually reduced at times when your illness is quiet and when new drugs are given. Other drugs may be given to help reduce the steroid dose (Steroid Sparing).

There are many other drugs that are effective in treating specific symptoms. Your doctor will talk to you about these.

Most drugs work by helping to balance the immune system.

There are some health supplements and aids that can be used to reduce symptoms, for example soap substitutes, eye sprays, and special oral care items of mouthwash and toothpaste.

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Living with Lupus

Both patients and their friends and relatives need to be educated well about lupus to avoid unnecessary stress and unhelpful comments and advice.

There are some things you can do to help make things easier for people with lupus…

Things that may be helpful:

Lupus can be well managed and most of the time your life can be relatively normal. “Flares” may be associated with certain triggers such as stress, infection, sunlight or something else. You will, get to recognize what the triggers are to your symptoms. Knowing this will mean that you can deal better with them. Between “flares” you may feel well and be symptoms free.

You will need to find out what works best for you.

  • Remember fatigue and tiredness is common so resting is good. Pay attention to your body and slow down especially when you are not feeling well. It is not good to push yourself too hard or a “flare” may happen.
  • Learn to timetable rest times after active times
  • Exercise is good for you as it strengthens muscles and keeps joints flexible. If you are feeling unwell, you should reduce your exercise until you feel better
  • Always use sunscreen, hats, glasses as sunlight can make lupus worse. Even some lighting inside the house and at work and school can make your lupus worse. It may be a good idea, in such a case to reduce the strength of the light globes or filter the light.
  • Always take the drugs prescribed by your doctor.
  • Your diet should include a variety of healthy foods. Don’t eat too many foods that contain high levels of sugars, salts and fats. Eat plenty of fruit, vegetables and protein.
  • Drink adequate fluids, in particular, water.
  • Live well and enjoy life.

Know about lupus and how you can help reduce the effects of lupus and its symptoms. Consult your rheumatologist.

#lupus
#SLE
#helpforlupus
#refertorheuma

Lupus: An Invisible Monster

“unwell…too tired…unable to keep up…”

Looking healthy is NOT equal to being healthy in lupus.

Fatigue is a real and significant issue for these patients.
Working too hard can trigger a flare.

Lupus is unpredictable.
Patients need focused and specialized medical care.

 

(Video adapted from Lupus UK: http://www.lupusuk.org)

Treatment of Lupus Nephritis: Top Ten Tips

from the lecture of Dr. Frederic Houssiau delivered during the #LupusACA 2017 Convention at Melbourne, Australia

  1. Always perform a renal biopsy
  2. Define a target
  3. Prescribe less steroids
  4. Prescribe mycophenolate mofetil or (Eurolupus) IV Cyclophosphamide for induction
  5. Maintain immunosuppression
  6. Prevent and treat co-morbidities
  7. Unmask non-adherence to therapy
  8. Keep the faith in targeted therapies
  9. Watch the Calcineurin-inhibitor story
  10. Keep hoping for precise medicine

Rheumatoid Arthritis: Treat Early to Prevent Disability

It takes an average of 5 years before patients with Rheumatoid Arthritis become diagnosed with the disease. By this time, they have contracted significant disability or disfigurement.
(https://www.ncbi.nlm.nih.gov/pubmed/26010598)

Most patients are mistaken to have gout or osteoarthrits and are given medications which take away the pain temporarily but don’t prevent progression of disease.

Early treatment can provide remission and significantly improve quality of life.
#refertorheuma
#rheumatoidarthritis
#PRA

PRA Launches its Gout Awareness Campaign

When in Gout, consult a Rheumatologist… 😊

Philippine Rheumatology Association

Gout is an episodic, severely painful form of inflammatory arthritis caused by increased uric acid. It afflicts 1.6% of Filipinos and has increased in prevalence over the last decade. It primarily affects men, starting in their 20’s. Women, mostly those who are post-menopausal, may become victims as well.

Left untreated, gout becomes more severe and attacks more frequent as time goes by. It may be triggered by eating purine rich foods. It also can be seen in patients on various medications like aspirin, diuretics and some anti-TB medications.

During gout attacks, pain is extreme. Even lightly touching affected joints can be intolerable. Patients are unable to walk or put any weight on painful joints for days. This leads to missed days at work, anger and depressive symptoms, and overall poor quality of life.

Later on, chronic gout can frequently lead to kidney stones, joint erosions and deformities, large visible joint and soft…

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PRA Statement on UA Block

A friendly reminder/warning to our dear patients (From the Philippine Rheumatology Association)…

Philippine Rheumatology Association

The Philippine Rheumatology Association warns the public against the use of UA Block, an unregistered herbal supplement for arthritis. The Philippine Food and Drug Administration (Ph FDA), through advisory no. 2015-035, has declared this drug to be potentially dangerous to health. Rheumatologists have observed serious medical complications which may be associated with this product among some patients.

UA Block

Selling of this product is in direct violation of the Food and Drug Administration Act on 2009 (Republic Act No. 9711). To ensure public safety, we call on everyone to remain vigilant and report establishments selling these products to report@fda.gov.ph or (02) 807-8275.

Link to Philippine FDA Advisory No 2015-035 here.

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A Lay Fora on Gouty Arthritis

On Making Science Interesting, The “Curse of Knowledge” and The Myth of “Dumbing Down” (A Letter to My Co-Fellows)

Dear Co-Fellows:

I believe that we are all like 13 year olds learning a new and difficult topic, especially in a challenging field as rheumatology. And sometimes, we have been told not to be “too basic” or “too elementary” in our explanations; that we should use the scientific language to speak and explain…

I beg to differ. I believe that we should simplify as much as we can to the point of telling stories or simple analogies.

I’ve been reading a book called Made to Stick and it has helped me a lot. I will share some concepts to you when we have free time. I shared one this morning, about the “Curse of Knowledge.” It simply means that once we have become knowledgeable about a certain topic, we tend to forget how we learned it (whether it was the hard way or the easy way), and sometimes, we find it hard to understand why people don’t understand what we talk about (when it seems soooo easy to us). I am guilty of this curse, especially on the technical, geeky stuff. A lot of times I find it hard to understand why people can’t understand these stuff (like, why Ken can’t get the concept of Cloud-based files storage like Dropbox. Hehe). That is my “Curse of Knowledge.” What I “hear” in my brain, and the cadence by which I hear it is not the same as what Ken “hears” or how fast he “hears” it. I need to simplify (mistakenly perceived by others as “dumbing down”) so that people can understand.

The book I am reading, Made to Stick taught me the principle of accuracy vs accessibility when teaching. Let me share this brief excerpt:

“We discussed the Curse of Knowledge in the introduction—the difficulty of remembering what it was like not to know something. Accuracy to the point of uselessness is a symptom of the Curse of Knowledge. To a CEO, “maximizing shareholder value” may be an immensely useful rule of behavior. To a flight attendant, it’s not. To a physicist, probability clouds are fascinating phenomena. To a child, they are incomprehensible.

People are tempted to tell you everything, with perfect accuracy, right up front, when they should be giving you just enough info to be useful, then a little more, then a little more.”(Excerpt From: Heath, Chip. “Made to Stick.” Random House Publishing Group, 2008. iBooks.)

Also, watching this 11 minute TED video by Tyler DeWitt awhile ago, inspired me once more, to overcome this “Curse of Knowledge”  and shy away from the myth of “Dumbing Down” and be able to teach in a simple way. I hope you too will find it useful as we become educators in the near future 🙂

Here’s the video: 

Enjoy guys 🙂

Regards,

Allan

Educational Resources

Available at the National Bookstore or at the Section of Rheumatology UP-PGH

PGH RHEUMATOLOGY

The Section of Rheumatology has actively produced educational materials for the lay. The first was in 2000 with the Arthritis Komiks series – Arthritis, Osteoarthritis, Gout– in the Filipino language. These were given free to patients and caregivers during section activities like ABaKaDa ng Rayuma, a monthly lay encounter in the Outpatient Department of UP-PGH and during the Lupus Club meetings. Copies of the Arthritis series is still available in the office. These comics series were made possible by educational grants from Pfizer Philippines and MSD, with story line by Dr. Heizel Manapat-Reyes and Dr. Clemente M. Amante as adviser.

Recently, several members of the staff collaborated with training residents of the Department of Medicine as authors of the Health Booklet series project of the Department. This was a department project of the former Chair and now Dean Agnes Mejia. The most recent publication is Arthritis in the Young

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