Risk factors, treatments, symptoms: all 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 two patients and can change in the same patient, 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 you recognise a flare-up?

The patient often knows the type of symptoms he or she is likely to have that indicates an outbreak. It's important that they can 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 an outbreak coming on? Is there a typical frequency?

Many patients suspect an outbreak a few days before it occurs. This is the goal of therapeutic education for patients and the Lupus Living Lab: to empower patients, enable them to report on their feelings, quantify risks, exposure thresholds, etc. But some relapses will always occur too quickly to be managed beforehand, even for expert patients.

Also, the frequency of relapses is very variable. Smokers, black skin patients generally have more attacks, but if treatments are adapted, there is no reason for these patients to continue to experience more attacks.

If the flare-up is certain, what are the steps to take?

The patient may know how to manage the symptoms they are experiencing, such as increasing cortisone doses, but regardless of how well they control the disease, it is always necessary to better modify their treatment in conjunction with their doctor. The development of teleconsultation is a good thing to help maintain a close relationship with their doctor, as the patient will be able to easily obtain confirmation of the procedure to be followed and a possible prescription, without having to travel.

So increasing the doses of treatment is the solution for relapses?

It is, most of the time. This is why the earlier an attack is managed, the less 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 to be aware of your symptoms and to always have a stock of medication with you if you are far from your health centre or travelling.

What causes a lupus flare-up? 

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. Vaccination can potentially trigger a disease outbreak, particularly the first outbreak of the disease, but the important fact is that for patients who are treated in remission, they no longer have any concerns about vaccines.

>> Vaccines, unravelling the true from the false

It is important to understand that a vaccine can trigger an outbreak but is never the cause of the disease. Scientific data exist on this subject: researchers have collected serological data from healthy patients up to 10 years before the onset of the disease. However, all patients 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 all the more essential to get vaccinated because the main cause of excess mortality among lupus patients in France is infection. Vaccines are therefore a real protection.

Can emotional and psychological factors be involved in triggering an outbreak 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 an attack, 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. She compared the epidemiology of patients with autoimmune diseases to that of people who are not ill. Patients have a significantly higher rate of psychological trauma, especially in childhood!  Psychological disorders may have contributed to immune dysfunction, but this is not proven.

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

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

How to avoid a flare-up?

Beyond adherring to your treatment, all the lifestyle-dietary rules to limit the risk factors are to be followed: protect your skin from the sun, avoid infections, do not smoke, avoid stress. In oncology, sports can be prescribed by doctors; non-medicinal actions can thus have real effects on the body. Healthy living is therefore essential. Therapeutic education also allows patients to better manage their disease and its benefits.

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

Is there a possibility to completely eliminate flare-ups?

It is possible to avoid relapses: patients 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 patient's disease, treatment must not be stopped without guidance from your healthcare team.

(Re)read the first interviews of Laurent Chiche :

• Lupus: therapeutic education and how to become involved with your condition
• Medical research for lupus: towards less toxic treatments and personalised medication

When was the last time you had a relapse?

Do you know how to recognise your symptoms?