News

In People with Lupus, Age and Location Linked to Delayed Follow-Up After Hospitalization

April 3, 2023

March 30, 2023

Research shows younger people living with lupus and those living in rural or disadvantaged areas are less likely to have a follow-up appointment with their doctor shortly after they’ve been discharged from the hospital. One quarter of people with lupus are hospitalized every year, and one-third are re-hospitalized within 30 days, underscoring the importance of timely outpatient care.

Looking at data from 8,606 adults hospitalized with lupus on Medicare, researchers found that 35% lacked follow-up within 30 days overall. That follow-up rate is worse than the rate reported among people with other chronic diseases.

People with lupus who also exhibited the following characteristics were less likely to have a timely follow-up appointment after hospital discharge:

  • More co-occurring illnesses
  • A longer hospital length-of-stay
  • Rural place of residency
  • Greater neighborhood disadvantage

In the 65 years and older cohort, receiving timely follow-up care was associated with a 65% lower mortality rate in the month following hospital discharge, highlighting the tremendous value of outpatient treatment in this population in particular.

Regular preventative and follow-up care is critically important to living well with lupus, yet many struggle to get the medical support they need. Learn more about barriers to lupus diagnosis and care.

 

Article Credit: Lupus Foundation of America | lupus.org

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RINVOQ Advances to Phase 3 Clinical Trials for Lupus Treatment

April 3, 2023

March 27, 2023

AbbVie announced that its drug therapy upadacitinib (also known as RINVOQ®) is entering Phase 3 clinical trial for treatment of lupus. RINVOQ is already approved for the treatment of other autoimmune conditions, such as rheumatoid arthritis, psoriatic arthritis, and eczema.

In the M19-130 Phase 2 trial of RINVOQ, the drug met its primary endpoint either given alone or as a combination therapy to people with moderately or severely active lupus disease. The drug was given to five groups, a total of 341 people, and none of the trial participants exhibited any new safety issues with the treatment.

Continue to follow the Lupus Foundation of America for updates on RINVOQ as well as other lupus clinical trials.

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Article Credit: Lupus Foundation of America | lupus.org

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Organ Damage Associated with Worse Cognitive Performance in People with Lupus 

March 16, 2023

March 6, 2023

 

In a new study, organ damage was associated with worse cognitive performance in people with lupus. Cognitive dysfunction (CD) or “brain fog ” is a functional impairment whereby an individual exhibits deficits in attention, learning (verbal and nonverbal), memory (short-term and working), problem solving, motor (physical) function, processing speed, visual and auditory processing. At some point during their lives, 70-80% of people with lupus experience brain fog.

 

Researchers examined the disease and treatment records of 89 people with lupus. They found that organ damage was consistently associated with CD, and resulted in poorer performance in three of seven tests traditionally given to assess cognition. The researchers examined other markers of disease activity, blood test results, and genetic involvement for possible association to CD and none were found. CD can occur in people with lupus who do not exhibit high disease activity at a given point in time. Cognitive screening is important as prevalence of CD was identified by formal testing in only 8% of the group.

 

One of the study authors, Eric Morand, MBBS, PhD, Monash University, received the Lupus Foundation of America’s 2022 Evelyn V. Hess Award. Learn more about lupus and brain fog.

 

Article Credit: Lupus Foundation of America | lupus.org

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New Study Found People with Lupus Have Unique Oral Bacteria

March 1, 2023

February 23, 2022
 

In a new study, researchers found people with lupus have a unique mix of oral bacteria, or “microbiome,” that is correlated with disease activity. The oral microbiome is made up of a collection of more than 700 unique bacterial species, and disturbances in the microbiome have been linked to various inflammatory diseases. The findings from this study suggest that specific oral bacteria found in people with lupus could be used as new, non-invasive lupus biomarkers and may serve as a therapeutic target for exploring new treatment options.
 

The oral microbiome is a collection of bacteria that affects the progression of health and disease. To assess whether oral bacteria diversity is linked to lupus, researchers compared the characteristics of the oral microbiome in people with lupus against a healthy control group. They collected and examined tongue coating samples from 255 people with lupus and 280 controls. Compared to the people without lupus, people with lupus had significantly more diverse oral bacteria present on their tongues. Furthermore, people with lupus had higher and lower levels of certain types of bacteria that were linked to greater disease activity.
 

These findings suggest people with lupus have a unique oral microbiome, which could promote new methods of lupus diagnosis and monitoring. While more research is needed to fully understand the relationship between lupus and the oral microbiome, these findings will help guide future studies. Learn more about oral health issues with lupus.

 

Article Credit: Lupus Foundation of America | lupus.org

 

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COVID-19 Vaccine Response and Management in People with Lupus

February 8, 2023

A new study finds therapies used to treat lupus (mycophenolate mofetil (CellCept®), tacrolimus (Protopic®), and belimumab (Benlysta®) significantly reduce a person’s response to the COVID-19 vaccine. The COVID vaccine was most effective and did not trigger disease flares when vaccine administration was managed along with the person’s lupus medications. Some immunosuppressive drugs used to treat lupus increase COVID infection risk and decrease the vaccine’s effectiveness.

 

Researchers analyzed and compared data from 334 people with lupus and 1,887 health care workers without lupus. They examined COVID antibodyImmunoglobulin G (IgG) levels after vaccination over time in both groups. Higher IgG levels indicate a stronger immune response to the vaccine, suggesting a greater protective effect against the virus. They also looked at the effect of immunosuppressive medications on post-vaccination antibody levels in those with lupus.

 

The researchers found that taking mycophenolate mofetil, tacrolimus, and belimumab at the time of vaccination was associated with reduced IgG (COVID antibody) levels. However, temporarily stopping mycophenolate mofetil administration on the day of and for one week after the COVID vaccine resulted in increased post-vaccine IgG (COVID antibody) levels and did not lead to flare activity.

 

Researchers hope these data will be helpful to clinicians and help revise treatment guidelines for better outcomes in people with lupus. The Lupus Foundation of America remains committed to providing resources and support regarding the COVID-19 pandemic. Learn about up-to-date health information on the COVID-19 vaccine for people with lupus and talk to your doctor before making any changes to your medication.

Article Credit: Lupus Foundation of America | lupus.org

 

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New Investigational Drug for Systemic and Cutaneous Lupus Advancing to Phase I Clinical Trials

January 15, 2023

Ventus Therapeutics Inc. has announced the development of VENT-03, a potential first-in-class drug designed to target cGAS, a cell receptor linked to lupus and a broad range of other diseases including neuroinflammatory and neurodegenerative diseases. This will be the first drug of its kind to advance into clinical development, and it will enter its first Phase I trial cGAS is thought to be involved in both systemic lupus erythematosus (SLE) and cutaneous lupus erythematosus (CLE), and the latest news marks an exciting step forward in lupus drug development.

Last year, Ventus received a Lupus Research Program Idea Award from the U.S. Department of Defense (DoD) to study the cGAS inhibitor as a potential treatment for lupus. The Lupus Foundation of America’s (LFA) advocacy efforts and strong community of advocates led the fight in establishing the DoD Lupus Research Program in 2017, successfully advocating each year for continued funding of this critical program. To date, the program has provided more than $76 million to fund high-impact, high-quality studies to help find ways to diagnose and treat lupus more effectively.

Continue to follow the LFA for updates on VENT-03 and learn more about medications used to treat lupus.

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Article Credit: Lupus Foundation of America | lupus.org

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Lupus and Self-Care

October 3, 2020

What Does Self-Care Mean?

 

In a nutshell, self-care is any activity that we incorporate into our daily lives that creates balance and fulfills our mental, emotional, and physical needs.

 

As simple as it seems, it can be very difficult to execute. Why? Though appropriate self-care has been linked to overall improved mood and reduced anxiety, it can be incredibly challenging to find the right balance for you, and for those who are around you. Additionally, it seems even more arduous to overcome the fictitious guilt that taking care of yourself isn’t actually “selfish.”

 

What Doesn’t Self-Care Mean?

 

“I pushed myself. I gave of myself. I gave and gave and gave, until I no longer knew who I really was. I was beginning to think I didn’t really exist at all. Any space I took up was only to assess and service someone else’s needs. But, what were my needs? I didn’t seem to know…” – said every person with lupus…ever.

 

“Self-care is never a selfish act—it is simply good stewardship of the only gift I have, the gift I was put on earth to offer to others.”-Parker Palmer

 

Knowing what self-care isn’t is even more important than knowing what it is. Self-care does not equate to selfishness. Self-care isn’t vanity, self-righteousness, or narcissism. It isn’t overindulgence either. It is the acknowledgment that if you don’t take care of yourself, you will not be able to take care of others. It is understanding what we need in order to be a healthy functioning human being and take care of ourselves as a whole – so we have the energy, enthusiasm, and empathy to give to those around us.

 

Here are the basics of self-care:

 

  • Make a list of things that bring you joy, peace, and centering. It might be taking a walk, a bath, or listening to a daily meditation or guided prayer lesson. Over time try to incorporate the forms of self-care that work best for you into a consistent routine. Get into a rhythm of setting time for appropriate and necessary self-care.

  • Add your self-care activities to your calendar, be vocal about them with family and friends, and be intentional with seeking out opportunities to enhance your self-care routines. Self-care is something that you have to actively plan, it is not going to just happen on its own.

  • Be mindful of why you are choosing to participate in self-care when you are doing it. You might need to repeat a mantra to yourself like this, “I need to do this for myself because my body is worthy of being taken care of.” Take a mental inventory of what you choose to do, how it feels, and what you feel like after.

 

Article from https://www.morethanlupus.com/post/lupus-and-self-care

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