Risk factors, treatments, symptoms: Everything you need to know about lupus flare-ups!

Hello Laurent, thank you for agreeing to answer our questions. What are the symptoms of a lupus flare-up?

The symptoms are not the same between people diagnosed with lupus and can change in the same person, making it almost impossible to know or learn all the symptoms that could occur. However, most of the time, the symptoms concern the skin or joints.

Faced with such varied symptoms, how can an individual recognize a flare-up?

An individual diagnosed with lupus often knows the type of symptoms he or she is likely to experience that indicate a pending flare-up. It's important that they spot them. For all other symptoms, do not hesitate to ask your specialist. Don't play guessing games: check to see if this new symptom is related to lupus or if it's something else, such as a complication of a treatment or an infection.

Is it possible to feel a flare-up coming on? Is there a typical frequency?

Many people diagnosed with lupus are able to suspect a flare-up a few days before it occurs. This is the goal of therapeutic education for those diagnosed with lupus and the Lupus Living Lab: to empower those diagnosed with lupus, enable them to report on their feelings, quantify risks, identify exposure thresholds, etc. But relapses sometimes will present themselves too quickly to be managed beforehand, even for expert patients.

Also, the frequency of relapses is very variable. Smokers, and darker skin individuals generally have more attacks, but if treatments are adapted, there is no reason for these individuals to continue to experience an increase in the number of attacks.

If flare-ups are certain to occur, are there proactive steps a person should take?

The individual may know how to manage the symptoms they are experiencing, such as increasing cortizone doses, but regardless of how well a person controls the disease, it is always necessary to better modify their treatment in conjunction with their doctor. The development of teleconsultations is a good thing, as it can help maintain a close relationship between the patient and their doctor. The individual will be more readily be able to obtain an appointment, a protocol to be followed, and possibly a prescription, without the need to drive to the doctor's office.

Increasing the treatment dosage is the solution for relapses?

It is, most of the time. This is why the earlier an attack is managed, the fewer consequences, damage and possible sequelae on the organs will occur. The side effects of treatment will be experienced for a shorter period of time, with less impact. It is therefore important for a person to be aware of their symptoms and to always have a stock of medication with them in the event that they are far from their doctor's office or are travelling.

What causes lupus flare-ups? 

Smoking promotes disease activity and therefore increases the number of relapses. The use of contraceptive pills (containing estrogen) can also potentially lead to flare-ups. An infection is another trigger that could potentially cause a flare-up.

Vaccines are often implicated in autoimmune diseases, can you tell us more about them?

A vaccination is a stimulation of the immune system, like an infection, but much less impactful. Vaccinations can potentially trigger a disease flare-up, particularly the first flare-up of the disease, but the important fact is that for patients who are treated in remission, there is not any concerns about vaccines.

>> Vaccines, unravelling the true from the false

It is important to understand that a vaccine can trigger a flare-up/relapse but that it is never the cause of the disease. Scientific data exist on this subject: researchers have collected serological data from healthy individuals up to 10 years before the onset of the disease. However, all individuals had positive antibodies to the disease that could be observed up to 5 years before the "official" start. Whatever the trigger, the disease was already there.

It is essential to get vaccinated because the main cause of excess mortality among those with lupus in some countries, like France, is infection. Vaccines are therefore a real protection.

[Editors Note: Please note that as of 8/1/2019, the CDC states that people with lupus "can get many vaccines, but not all. Vaccines that do not contain live viruses are safe for people with lupus. However, some people with lupus have no problems when they get vaccines with live viruses. Talk to your doctor or nurse about what is best for you." Click here to read the CDC's full information sheet on lupus, including lupus and vaccines]

Can emotional and psychological factors be involved in triggering a flare-up of lupus?

In general, the psycho-somatic framework applies to all diseases. For the past ten years, we have also known that the "stress factor" is involved in the evolution of cardiovascular diseases, cancers and autoimmune diseases. This is a very likely parameter of the occurrence of a lupus flare-up, even if it has not been very well studied: causality is a very difficult concept to establish in medicine, especially when dealing with human emotional complexity.

A recent study went further. The study compared the epidemiology of people with autoimmune diseases to that of people who are not ill. The people with autoimmune diseases have a significantly higher rate of psychological trauma, especially in childhood! Psychological disorders may contribute to immune dysfunction, but this is not proven.

There is also an over-representation of severe psychiatric illnesses in people with autoimmune diseases: schizophrenia, psychosis, bipolarity... 

Finally, in the particular case of lupus, neuropsychiatric disorders are among the signs of the disease.

How should an individual avoid a lupus flare-up?

Beyond adherring to their treatment, all lifestyle-dietary rules to limit the risk factors should be followed: protect their skin from the sun, avoid infections, do not smoke, and avoid stress. In oncology, exercise can be prescribed by doctors; non-medicinal actions can thus have real effects on the body. Healthy living is essential. Therapeutic education also helps those diagnosed with lupus and other conditions better manage their disease.

As far as diet is concerned, for lupus, nothing has been formally demonstrated so far. However, with access to microbiota characterization, it will certainly be possible to verify whether targeted dietary actions can be carried out individually for people diagnosed with chronic conditions.

Is there a possibility to completely eliminate flare-ups?

It is possible to avoid relapses: people diagnosed with lupus go into prolonged remission or even stop their treatments completely, even if plaquenil is usually kept on as a treatment because it aids in cardiovascular protection and relapse prevention. As we do not yet have a predictive tool for the progression of each individual's disease, treatment must not be stopped without guidance from their healthcare team.

(Re)read the prior interviews with internist and Carenity's expert, Laurent Chiche :

[1] Lupus: therapeutic education and how to become involved with your condition

[2] Medical research for lupus: towards less toxic treatments and personalized medication

When was the last time you had a relapse (flare-up)?

Are you able to effectively recognize your symptoms?