Tips for Learning to Live with Lupus

by Matson Huff | Dec 28, 2020 | Lupus

Lupus is a systemic autoimmune disease in which the body’s immune system attacks healthy tissue and organs. It’s characterized by widespread inflammation which can appear in different areas of the body, including the skin, joints, blood cells, kidneys, brain, heart, and lungs. Oftentimes, lupus is challenging to diagnose, as its symptoms can vary widely and mimic other conditions. Receiving a diagnosis can bring relief in some ways, as it puts a name to an array of frustrating symptoms. Yet, it also means you’ll have to adapt to living with a chronic illness. Here are some tips for learning to live with Lupus. 

Learn About Lupus 

Everyone experiences lupus differently, which can make learning about lupus challenging. With that being said, there are helpful resources such as The Lupus Foundation of America to help you find out more about the condition.

You may have been experiencing an array of strange and uncomfortable symptoms that come and go. During lupus flares, symptoms such as rash, swollen joints, sores or ulcers, and fever can intensify. You’ll want to start tracking conditions leading up to flares to see if they occur in a pattern and an identifiable trigger brings them on. For instance, flares often arise after emotional or physical stress, as well as exhaustion, injury, and viral illnesses.

Find the Right Doctor

Since lupus is fairly rare, most general practitioners don’t see patients with the condition very often. To ensure you have access to the right treatment, you’ll want to see a specialist. Most people with lupus visit a rheumatologist, who specializes in systemic autoimmune diseases. 

Once you’ve found a reputable doctor, you’ll want to discuss wellness strategies and treatment options. Your treatment approach may evolve, so know that you don’t have to explore all options right away. You might also consider adopting lifestyle strategies to help control symptoms, such as beginning a meditation practice to limit emotional stress.

Seek Support

Online support groups are rich with resources and firsthand accounts. Within these groups, you might be able to connect with someone whose symptoms are similar to yours and discuss treatment options that worked for them. You can also discuss the emotional and mental challenges that come with living with a chronic illness and turn to people who are ready to lend an ear. Lupus Warriors on Facebook, LupusConnect, and Lupus Research Alliance are a few options to consider.

Maintain Ongoing Care

You’ll want to visit your rheumatologist regularly, even if you aren’t having frequent flare-ups. With blood work and regular conversations, the doctor may be able to help you pinpoint which treatments and lifestyle modifications are working effectively to control flares. They might also help you explore complementary and alternative treatments to manage symptoms. 

Many have begun to seek regenerative medicine, also known as stem cell therapy, as an alternative option for managing symptoms. Stem cells are considered the building blocks of life since they have the ability to self-renew and differentiate into specialized cell types. Mesenchymal stem cells (MSCs) can be sourced from autologous or allogeneic tissues and act as immunomodulators that suppress the activity of T regulatory cells.

Since lupus impacts your immune system, you’ll also want to take care to minimize your risk for other illnesses. This includes staying up-to-date with vaccines and exams. If you live with lupus it will require some adjustments, most patients can live fulfilling, happy lives after their diagnosis. By learning more and finding the right care providers, you can begin taking control of your lupus and your overall health. Contact a Care Coordinator today for a free assessment!

Mesenchymal Stem Cells Help Patients with Severe Systemic Lupus Erythematosus

by admin | Jun 10, 2019 | Lupus

Systemic lupus erythematosus, also known as SLE or lupus, is a chronic inflammatory condition that can affect almost every organ in the body. Commonly, patients with lupus suffer from fatigue, fever, muscle pains, and fluctuations in weight. Perhaps the most noticeable feature of lupus is a butterfly rash that affects the nose and cheeks. In its most severe form, lupus can be life-threatening. As many as half of all patients with systemic lupus erythematosus experience some sort of kidney involvement. One feared manifestation of lupus is an inflammation of the kidney called lupus nephritis. Patients can also experience blood clots in the arteries and veins, and serious inflammation of the gastrointestinal tract, lungs, and/or heart.

There is no cure for lupus. The goals of treatment are to reduce the severity of lupus symptoms, prevent damage to organs, and improve patient quality of life. Many treatments for lupus are merely preventive. For example, patients with lupus know that staying out of the sun or using sunscreen can help prevent skin rashes that often occur during the disease. Unfortunately, the treatments that are commonly used for SLE cause serious side effects. For example, steroids can help control flares, but they are not suitable for long-term use. Immunosuppressants are sometimes helpful, but they can increase a patient’s risk of infection. Newer biologics such as belimumab and rituximab are more selective treatments, but are not helpful for most patients and remain relatively expensive.

Not surprisingly, many patients with systemic lupus erythematosus are unsatisfied with their current treatments. This is frustrating for patients, families, and doctors. Thus, researchers have started testing stem cell therapy to determine if this novel treatment could be effective for treating lupus.

In one such clinical study, scientists collected mesenchymal stem cells from umbilical cord tissue (the substance that usually gets thrown away as medical waste after a baby is born). They then infused the purified stem cells into patients with SLE who had a difficult-to-treat disease (i.e., patients had failed to find relief of SLE symptoms from standard treatments or had life-threatening complications from the condition). The scientists then followed the patients for about eight months on average, though some patients were followed for as many as 28 months after stem cell treatment.

Patients treated with mesenchymal stem cells showed dramatic improvements in a measure of lupus disease activity called the SLEDAI. In fact, patients enjoyed significant improvements in as little as one month after mesenchymal stem cell treatment. This effect lasted for up to two years in some patients. Moreover, patients treated with umbilical cord-derived stem cells had improvements in kidney function and lost less protein in their urine. Impressively, patients treated with stem cells showed improvements in various markers associated with active lupus including serum antinuclear antibody (ANA), anti-double-stranded DNA (anti‐dsDNA) antibody, serum complement C3 and C4, and albumin levels. Patients with lupus know that these blood markers are used to track the severity of the condition.

While one person had severe nausea during stem cell infusion, this passed quickly, and no other treatment-related side effects occurred. In fact, stem cell treatment was well tolerated by all patients in the study. These remarkable results will, of course, need to be repeated and verified in larger clinical trials. Nevertheless, the dramatic improvements seen with umbilical cord mesenchymal stem cells in patients with difficult-to-treat lupus are impressive. While more work needs to be done, patients and doctors are now looking toward stem cell treatments in the hope that this terrible disease can finally be treated effectively.

Reference: Lingyun, S. et al. (2010). Umbilical cord mesenchymal stem cell transplantation in severe and refractory systemic lupus erythematosus. Wiley Online Library. 2010 https://doi.org/10.1002/art.27548.