Lupus is basically an autoimmune disease. When we say autoimmune disease, it means that our immunity is attacking our own body. Normally, immunity is our resistance power. It’s a power to fight against any infections that are affecting our own body, and it is usually protective for one’s body. But certain times, this immunity can attack their own self, and that is when we call it autoimmunity.
Lupus is one of the most important autoimmune diseases, which commonly affects women between 15-40 years of age. So very young women can get affected with this disease. Males are rarely affected in this particular condition. But no age is an exception. There could be very young children who can get the disease, there could be elderly people also who may develop this disease.
Since this is an autoimmune disease, it can affect different parts of the body. Most of the time, 90% of the time, the disease affects your skin, joints, or the blood counts. So most of them present to us with skin rashes, especially over the cheeks and the nasal bridge. On exposure to the sun, rashes can occur on any part of the body. Along with that, heavy hair loss, ulcers in the mouth, ulcers in the nose are other common symptoms. Another set of people can start off with joint pains and joint swellings, with a lot of stiffness in the early morning when they will not be able to make a fist. And certain people may present with a decrease in blood count, which can start all of a sudden and does not respond to common medications like iron tablets or vitamin supplements. So here, what happens is that haemoglobin may drop, the WBC count (platelet count) might just drop and despite giving blood transfusions or platelet transfusions, the counts may not actually improve because though we are supplying them outside blood and blood products, the immunity will keep damaging their blood cells.
This is the most common presentation, but along with this, the people can present with kidney problems. Like 50% of them can have protein loss through their kidney. It does not mean that their kidney is damaged. It just means that their kidney is losing more protein. If we diagnose it at an early stage, that they have a kidney problem, it is possible to completely control this problem and get the kidney back to completely normal stage. 30% of them can have problems in the muscles, can have problems with their heart, or the lungs. So they can present with chest pain, breathlessness i.e. they have shortness of breath intermittently or while walking, or they can have chest pain to one side of the chest or they can have central chest pain. They could have problems with their intestines. They can have problems with their nerves or their brain. So basically, lupus does not spare any organs. It can affect any organ, and for the first time, you may present yourself with any different symptom.
Most of the time, patients with lupus do not reach a rheumatologist initially. They have symptoms, but it pertains to any particular organ. For example, they initially have only a skin rash. Then they may meet a dermatologist. Or if they have chest pain, or if they are experiencing breathlessness, they might meet a cardiologist. It is basically this particular speciality, this particular physician, who may actually see you, keep your symptoms all together, look at your reports, then may tag you as a patient suffering from lupus, and refer you to a rheumatologist.
The role of a rheumatologist in lupus is that first, they confirm that this is lupus by asking your symptoms, by looking at your blood investigation, and doing certain tests that are very specific to lupus i.e. ANA. Based on this, we make a diagnosis of lupus and after we make a diagnosis, we look at which organs are getting affected because you may have only joint pain, but you may actually have an internal organ involvement like a kidney involvement, which may not be obvious to you but may be obvious on the test that we do. So rheumatologists do some tests to find out which other organ is involved.
After rheumatologists find out which organs are involved in lupus, accordingly the treatment will change. In lupus, rheumatologists will have to give steroids in the initial phases at higher doses. Normally, for a common man, steroids are not good for their health because they actually decrease their immunity. But in lupus, immunity is affecting their own body; it is immunity which is at fault, so we have to control this immunity, and that is why steroids become very important in the initial treatment of lupus. In the long term, rheumatologists do not want to continue very high doses of steroids. We would have put steroids at very low doses which do not cause any harm to you. Basically, we will be maintaining a very low dose of steroids. But since we do not want the disease to increase as we decrease the steroid, we add on something called steroid sparing agent, which has the same effects as that of steroids. They do not have the major side effects that steroids usually have.These steroid sparing agents are very helpful in lupus, in controlling the disease for long-term, and also in improving the survival of the patient. Usually, people who have lupus can have a mild disease where they may have only skin or joint involvement, or a minimal decrease in their blood count, or they may even have a severe disease where their kidneys and nerves are getting affected.
Depending on the severity of the disease, the treatment for the individual person can change. There could be people who are only given low doses of steroids, people who are given very high doses of steroids, people who are given steroid sparing agents, immunosuppressants which are mild, or immunosuppressants which are severe. This depends on the stage of the disease, and treatment can vary. For people who do not take treatment, what would happen is, initially, the disease is in a treatable phase. If we start off in the early-stage of any kidney disease, the kidney can come back to normal. But if we do not do that, in the long term, the kidney could be damaged. There could be an increase in creatinine. You may have to be put on dialysis, or you may have to go for a renal transplant.
Lupus is not a very small disease to have. There could be a lot of complications even in people who are very regular with treatment. There could be flares in particular situations like whenever your doses are suddenly decreased, or you stop medication for a few days, or you are going through a stressful situation wherein the disease may suddenly increase, and it may become very difficult at times to control the disease and make it completely normal.
It has been known that people who have lupus at the end of five years, out of every 100 patients, only 90 of them would survive. A lot of research is happening on the subject to see that even these 10 people lead a normal life. But that’s how the disease is at this stage, at present. Basically, what we expect from the patient’s end is a regular follow-up with regular monitoring and treatment as advised and keeping us regularly informed about any new symptom that they develop. In the initial few years, we may ask you to come for monthly or a bimonthly follow-up. Once we find that the disease is completely under control, we have control over the situation, then we would call you every 3-6 months and accordingly modify the medications. Certain patients with lupus who are well under control can be completely off most of the medications and may have to continue just 1-2 medications.
The precautions that we expect from the patient’s end: firstly, UV rays have been found to increase lupus. They increase the production of ANA within the body and can worsen the disease. What we usually expect from the patients who have lupus is that they do not get exposed to sunlight between 10 am-4 pm. Even if they have to get exposed, due to some reasons, it is better that they use sunscreens, hats or umbrellas to avoid direct exposure to the sun. Secondly, practising a very healthy lifestyle i.e. 30 minutes of exercise per day along with a good balanced diet i.e. eating a lot of green leafy vegetables, fruits, taking a lot of milk and milk products, and avoiding a lot of oily stuff and junk food are things that we expect.
Another thing we expect from patients is that they have to protect themselves from infection as much as possible. Personal hygiene and hygiene at home is something that is very important. And avoiding overcrowded places where you can easily catch an infection is one more thing that you should be doing because as such, your immunity is not functioning very well, and on top of that, we are giving immunosuppressants which can further decrease your immunity, so developing infections is something that is very commonly seen in patients with lupus. Another thing that a lot of people have a doubt about is that usually, most of these lupus patients are very young; they are between 15-30 years of age.
An age where they get married, they may have to plan a family, and they will have to handle their kids after that. So a lot of parents and patients with lupus or their husbands keep asking whether they can lead a normal life, whether they can plan a pregnancy in the future, will their child have any problems. First thing is that if a patient has lupus, it is under complete control, and a pregnancy is planned, you can have a completely normal baby with absolutely no problems.
The outcomes of pregnancies in lupus are as much as that of a normal pregnancy, but with the clause that your lupus should be completely under control. That is the most important thing. Lupus is not something that will spread to your baby post-delivery, so that is one thing you need not be worried about. Definitely, a patient with lupus has to plan pregnancy whenever your rheumatologist says your disease is completely under control. During pregnancy, you may require more follow-ups, more regular monitoring compared to any other normal person.
Considering that lupus is such a vast disease with so many manifestations, if you have lupus, you should be meeting a rheumatologist to find out which organs are affected, how severe is your lupus, and the treatment needs to be adjusted by them accordingly.