Living with lupus – How to manage symptoms

While there is no cure for lupus, physicians like Fahd Saeed, MD, PPG – Rheumatology, work closely with patients and their care teams to manage the symptoms and keep the autoimmune disease under control. Dr. Saeed tells us more about what patients living with lupus need to know.

It’s true there is no drug to kill or cure lupus, but there are treatments which can decrease symptoms and limit the damage the disease can cause. It’s all about managing the condition.  

Progression

Lupus has many faces. We say, if you know lupus, you know medicine. It involves every organ in the body, from head to toe. This can mean the brain, eyes, mouth, tongue, lungs, heart, liver, kidney, skin, and so on. That’s why it’s difficult to diagnose. It’s different in every person.

The most common presentation is swelling, stiffness and inflammation. A patient will start noticing these symptoms in their joints and reach out to a doctor. Initially, we are trying to determine what organs are involved and what organs are not involved. Then we can start working on a specific treatment plan. Sometimes, the treatment is worse than the effects, so we don’t move forward with medication. It just depends on what’s involved and to what degree.  

With lupus, a caregiver has to establish a baseline. They will look at the patient’s numbers when they are feeling normal and then when they notice disease activity. Every patient’s numbers are going to be different, but the baseline allows the physician to see what a patient’s numbers look like when the disease is quiet or when it’s high. Activity can be quiet for as long as three years. We still don’t know what causes flare ups, other than to say it’s influenced by hormones, emotional factors and physical activity.

Movement

Treatment depends on the symptoms the patient has, but when they are experiencing joint or muscle pain, I encourage exercise. This should be avoided if you are really sick and the activity is causing any pain, but otherwise, physical activity like swimming, hiking or biking, normally for 20 minutes or so a day, is a great way to manage the effects of lupus.

Medications commonly prescribed to manage the condition and disease activity can commonly lead to loss of bone mass and muscle mass. Being active can prevent these side effects as well. Because lupus is often diagnosed in younger people, this loss of bone and muscle mass can lead to bigger problems when they reach their 70s or 80s, so it’s important to stay on top of this risk.

Diet and Comorbidities

There’s a lot online about anti-inflammatory diets, but in reality, there aren’t any studies to confirm the claims. I encourage a diet low in fat, high in fruit and green leafy vegetables and whole grains. Consume poultry, fish and other meats in moderation, as these are high in fat and associated with inflammation. Vegetables are going to be the most beneficial. 

One thing a lot of people don’t realize is that a good number of patients with lupus don’t pass away as a result of the lupus. They actually have a higher incidence of other diseases, such as heart disease. We check our patients’ cholesterol and triglycerides because we know there’s a high incidence of comorbidity, but we can’t treat those symptoms. There’s nothing lupus medications can do for heart disease. It’s a cardiology issue. These patients will need to work with a cardiologist to learn about the proper diet, ideally low in sodium, and other measures to control their condition.

The same can be said for patients who have lupus but also diabetes. They have to follow a specific diet for diabetic care. Most patients with lupus end up on a steroid, like prednisone at some point. The most common side effect with steroids is increased appetite, so these medications can encourage weight gain. This is another reason we recommend exercise and smart eating.

Mild to moderate alcohol consumption is fine as long as your doctor is looking at liver function. Social drinking doesn’t seem to increase lupus activity unless you have liver damage. 

Sugar is another topic that comes up often. People with lupus retain a lot of water when they eat sugar. This makes them feel puffy. While this isn’t technically inflammation, I still don’t encourage consuming large amounts of sugar. A patient’s blood sugar is higher when they’re on steroids so consuming additional sugar can lead to diabetes. Sugar has also been linked to a higher risk of kidney disease and heart disease.

When it comes to diet, keep it basic, with lots of healthy vegetables and lean, low fat proteins. If you’re carrying extra weight, calculate the recommended amount of calories and try not to go over or under.

Supplements

With good intentions, a lot of our patients start taking extra vitamins, which I don’t typically recommend. As long as you’re eating a good diet, there’s really no need for supplementation.

There’s a lot of noise online and vitamin store salespeople who will market supplements as super solutions for reducing inflammation, but none of these products have been proven effective. They are not FDA regulated or tested. Additionally, taking them can be harmful because they can have interactions with your prescribed medications or interfere with their effectiveness. Many of them contain more than one ingredient and could result in a patient getting too much of one vitamin or mineral. In many cases, patients take multiple supplements with the same ingredient, which can be hazardous. You should always discuss any new supplement or medication with your care team of physicians first.

If a patient is taking steroids long term, I do often tell them to take calcium and vitamin D since steroids can cause osteoporosis and decrease bone mass.

Vaccinations

It is very important for people living with lupus to have all of their immunizations up to date and get the flu shot every year. With lupus, the immune system is not working to fight infection, so a simple flu could turn into pneumonia.

If a patient is on Immunosuppressant medications, they should consult their physician prior to getting their vaccines or flu shot. There are some instances where a live virus is used, and that might change the doctor’s recommendation or require that medications be suspended prior to receiving the vaccine.

Pregnancy

Lupus is a disease of younger females, so pregnancy is an important factor. If you plan to get pregnant or are pregnant, it can significantly hange your care plan – specifically, medications. It’s important to discuss your fertility and birth control plans with your physician on a regular basis. The doctor can work with your OB/GYN to create a safe and effective care plan.

Miscarriage or stillbirth can also be a sign of lupus. If this is something you’ve experienced, mention that to your physician. Your care team could provide specific medications to help maintain the pregnancy.

It’s also important to try and avoid getting pregnant while the disease is highly active. If the disease is effecting the kidney or heart, lupus can get worse during pregnancy. This might even lead to early labor. Communicate with your entire care team to monitor mother and baby closely and adjust medications to keep everyone healthy.

Resources

There are countless forums and web pages with information and patients can find support for almost any argument they want, but you have to be careful with the source. I recommend looking at validated sites like Lupus Foundation of America. Many of the websites and personalities out there have something to gain by endorsing a product or service and they can be very convincing.

Education is huge. I give my patients information and resources. I encourage them to write down their questions as they arise, so they can ask me during their appointment or email me. You have to remember that there are no stupid questions. You should always ask. Compliance and success go up with understanding.

 

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