With the drugs we have, we cannot get a cure for lupus disease, that is to say a permanent disappearance of the disease even after stopping the drugs. However, some patients may have very prolonged remissions (that is, disappearance of all signs of the disease) with treatment that has been minimized.
Lupus is a chronic disease, but the signs of which can be effectively relieved by appropriate treatment. Certain medications also help decrease the risk of developing an active flare-up or complication of lupus disease. The important thing for the patient is to take these drugs at an appropriate dose (which can be variable) and for a long time: this is what will prevent a relapse. However, lupus activity tends to decrease after menopause and the risk of relapse will also decrease.
How to live with lupus?
The treatments we currently have can put lupus in remission in most cases, but they must be taken for very long periods. In this context, the disease has consequences on the daily life of the patient who must adapt some of his activities and adopt certain reflexes to best preserve his chances of remaining in remission or not to have complications.
When taking cortisone, good food hygiene is required to reduce the risk of heart, bone or sugar metabolism. Some diets have been put forward to better control lupus, but their effectiveness has not yet been proven. The main thing is to maintain a good nutritional balance to avoid causing deficiencies, particularly in vitamins and calcium.
Smoking cessation is essential to obtain a less progressive disease in the long term. In fact, smoking is likely to reduce the effectiveness of synthetic antimalarials and it accelerates the risk of atherosclerosis, which is the first long-term complication of lupus, along with the risk of infection.
The practice of a physical or sports activity maintains the muscular force which can be disturbed by certain treatments, in particular cortisone, and it makes it possible to fight against cardiovascular diseases. It also helps regulate weight. It is not recommended to do physical activity during a push, but once remission is obtained, resumption is recommended.
For all patients with lupus, exposure to the sun is strongly discouraged as it may worsen the disease, even for those who have never had skin signs.
Sunbathing is to be avoided and it is necessary to have effective protection of the skin when the solar radiation is strong, such as by the sea or in the mountains (snow and water reflect the ultraviolet rays of the sun) .
You should know that white clothes or a parasol let the sun’s rays pass. Departures at times when the radiation (UV) is at a maximum, that is between 12 noon and 4 p.m., are discharges at risk for the patient suffering from lupus.
In case of sun, the lupus patient should favor long-sleeved clothes and tightly woven pants (cotton, jeans) and dark colors. There are also UV protective sportswear on the market. It is necessary to apply to the face and hands sunscreens with a protection index higher than 50, protecting from UVA and UVB rays.
To be effective, sunscreen should be applied every 2 hours, especially after each swim, even in cloudy weather (nearly 80% of UVB rays pass through clouds, mist and fog), and even under a Beach umbrella.
Wearing a wide-brimmed hat or a peaked cap is also recommended.
Self-tanners are allowed, but they do not protect from the sun.
Can you have an operation when you have lupus?
An operation is of course always possible provided you inform the surgeon and the anesthesiologist of your illness and the treatments taken.
In particular, anti-phospholipid syndrome must be the subject of special management, with an adjustment of anticoagulant treatments.
Due to immunosuppressive therapy and long-term use of cortisone, it will be necessary to prevent the occurrence of an infection in the immediate post-operative period.
Can you get vaccinated when you have lupus?
Lupus sufferers have an increased risk of infection and vaccination is an important part of protecting patients from infection. The usual vaccinations are not associated with a higher frequency of outbreaks of lupus disease.
On the other hand, in the event of long-term treatment with immunosuppressants or corticosteroid, live attenuated vaccines are contraindicated (BCG, yellow fever, oral polio , measles, rubella, mumps). Conversely, the pneumococcal vaccine is highly recommended if treated with an immunosuppressant.
Can you play sports when you have lupus?
Sport or physical activity can be practiced as often as possible, but care must be taken in the case of anticoagulant therapy or a drop in platelet count. Regular sport without excess maintains muscle strength, which can be impaired by certain treatments, such as cortisone. Sport helps fight cardiovascular disease, which is more common in lupus. Sport, finally, helps control weight.
Situations where sports should be avoided during lupus are rare. In the case of anticoagulant therapy or a drop in the level of platelets, there is a risk of bleeding in the event of injury if there is a violent sport (we recommend, for example, climbing, speed sports).
When lupus is pushing, sports should be avoided, but it is possible to practice walking or gymnastics if joint or muscle pain does not appear. The real contraindications are very exceptional: severe arthritis in pushing, cardiac or pulmonary involvement.
What contraception can you take during lupus?
A completely normal sex life is possible during lupus. Talk to the doctor to overcome some fears. The main problem is that of contraception, which cannot be based on traditional contraceptives, such as estrogen-progestins. These pose a risk of worsening the disease due to the presence of estrogens.
The doctor will therefore recommend possible contraception based on local contraception and in certain circumstances on progestins alone.
In case of associated dry syndrome, it will be necessary to provide vaginal lubricants to avoid pain related to vaginal dryness (dyspareunia).
Can we have children during lupus?
Outside the phases where the disease is poorly controlled, pregnancy is possible during lupus which is properly monitored and treated and pregnancies are most often successful. But it is necessary to program the pregnancy during the phases when the disease is inactive: lupus must have been in remission for at least 6 to 12 months.
Treatment should be adjusted and surveillance increased to ensure that lupus does not become active and uncontrolled again. It is also necessary to prevent the occurrence of clots by taking aspirin and / or anticoagulation and, in particular, in case of anti-phospholipid antibody syndrome.
In some cases, especially in case of kidney failure, the risks of pregnancy will be such that the doctor can advise against pregnancy. If large doses of cyclophosphamide are taken, for example, if you have kidney or brain damage, pregnancy will not be possible due to premature menopause.
Can we work and have a job?
Lupus is a chronic disease that does not interfere with work during remission. But, if the disease is very severe or poorly treated, the flare-ups may require sick leave.
Obviously, outdoor professional activities should be avoided, as exposure to the sun could put people at risk of disease outbreaks. The same is true for professional activities where there is a lot of stress. In the event of anticoagulant treatment, professional activities at risk of trauma should be avoided.
However, the main problem for patients remains fatigue and it is necessary to be able to plan rest periods. When this fatigue is not permanent, work is largely possible and preferable, in order to promote a good life balance and socio-professional integration.
Can you smoke when you have lupus?
Quitting smoking is essential when you have lupus. Tobacco is indeed a risk factor for greater activity in lupus and autoimmune diseases. Tobacco can even decrease the effectiveness of treatments like synthetic antimalarials, even if it does not change the levels in the blood.
Even if this negative relationship between lupus and tobacco is less strong than that which has been established in other autoimmune diseases such as rheumatoid arthritis, smoking cessation is recommended, all the more since it runs a risk of accelerated atherosclerosis.
Atherosclerosis is the first long-term complication of lupus, with the risk of infection.Tobacco is harmful even if it is passive and avoid areas where someone is likely to smoke.
Can we fly when we have lupus?
Lupus does not contraindicate travel, provided that you have sufficient protection from the sun when traveling to a sunny country and that you bring enough medicine. All modes of transport are possible, except in very rare situations, for example when there is a risk of thrombosis or when lupus is complicated by hypertension of the pulmonary arteries (pulmonary hypertension or PAH).
Long-haul flights increase the risk of phlebitis. Wearing compression socks reduces this risk. For patients who are on an anticoagulant because they have already had a phlebitis, or a pulmonary embolism, they are protected by their anticoagulant treatment, if it is well balanced. For lupus patients who have antiphospholipid antibodies (anticardiolipin or antiprothrombinase) in their blood, it may be recommended, in certain cases, to give a subcutaneous injection of low molecular weight heparin one hour before departure from the plane.
PAH causes respiratory discomfort, especially on exertion or when there is a reduced amount of oxygen (such as at altitude). Mainline planes are all pressurized and there is usually no problem, but some models give pressurizations which can be low.
Can we go to a tropical country when we have lupus?
Tropical countries expose two major risks to lupus, the sun with its risk of lupus flare-up and infections, especially yellow fever and malaria.
Sun protection is very important and must be done. Of course, you have to leave with enough treatment.
Vaccinations must be up to date and the main problem is the vaccination against yellow fever which is a live virus vaccine and which can only be carried out if the patient does not take immunosuppressants.
Regarding prophylaxis against malaria, a specialized consultation is necessary to assess the exposure to the parasite and the choice of prophylaxis according to the country and lifestyle on site (urban or rural stay, in dry season or rain, … ).
In all cases, the first preventive measure concerning malaria remains protection against mosquito bites: by repellents, by wearing long sleeves and pants in the evening and by the systematic use of a mosquito net to sleep. This will, on the other hand, have the advantage of protecting against other infections that can be transmitted by mosquitoes (such as dengue).
The parasite causing malaria is increasingly resistant to antimalarials and the various countries have been classified by the WHO with regard to resistance to antimalarials, and in particular to chloroquine. This classification divides the countries into 3 risk zones, from 1 to 3 (Zone 1: no resistance to chloroquine, Zone 2: intermediate resistance and Zone 3: countries of high resistance).
If traveling in Zone 1, the recommended treatment is chloroquine sulfate (Nivaquine®), if this treatment is already prescribed, it can be continued at the same dosage as in lupus and it will be sufficient. If the treatment prescribed in lupus is hydroxychloroquine (Plaquenil®), the data on anti-malaria protection conferred are limited, but its use as chemoprophylaxis antimalarial treatment is possible, at the same dosage as that carried out in the lupus.
Few countries are currently classified in Zone 1, because resistance to malaria has become very frequent and is increasing. If traveling in Zone 2 or Zone 3 (zones which concern most countries in Africa and Asia), a treatment adapted to the level of resistance must be instituted in parallel with the treatment for lupus.
The opinion of a specialist doctor is imperative in order to judge the possibility or not of prescribing these prophylaxis drugs without risk, based on possible contraindications (possible neuropsychiatric complications or photosensitivity) or interactions with the treatment of lupus: some molecules are therefore to be avoided in case of systemic lupus. Some Zone 2 or 3 antimalarial associations already contain an antimalarial, but these prophylaxis can be associated with the usual treatment of lupus because their prescription is generally limited in time.