How does autoimmune disease affect our mental health?

One of the biggest struggles of managing an autoimmune disease is the irregular onset of flares.  With autoimmune diseases, we find that we can no longer rely on our bodies to function the way they did before.  The uncertainty over how our diseases will flare and progress can cause tremendous anxiety, which many of us are familiar with.

It is not surprising then that a recent study found, for patients with systemic autoimmune rheumatic diseases, disease-related uncertainty is correlated with higher levels of depression, and anxiety and sickness impact.  Scientists also suspect that certain autoimmune antibodies can affect the brain in ways that lead to psychiatric symptoms.

Using the All of Us database, we found that 52% of patients diagnosed with autoimmune disease were diagnosed with a mental health condition within a year.  Specifically, 35% were diagnosed with depression, 34% diagnosed with anxiety, and 24% diagnosed with both depression and anxiety within the same year. More research is needed to understand the connection between autoimmune disease and mental health. 

If you have a question about autoimmune disease, let us know here and we’ll use the All of Us data to answer it in our next newsletter!

If you would like to join our efforts and provide information on your autoimmune condition, please join our registry or share it with a friend who has an autoimmune condition.  Donations are also greatly appreciated!

What do we know about the use of biologics in treating autoimmune diseases?

There has been a lot of buzz around new, biologic treatments for autoimmune diseases, but what are they and how often are they actually being used?  Biologic therapies contain proteins like those produced by our bodies (like antibodies).  These proteins can target specific immune pathways, such as cytokines, B cells and T cells.  However, due to their high cost, the need to administer these drugs intravenously, and adverse events associated with them, biologics are generally not the first therapy used for autoimmune patients.

We looked at the All of Us database to see how often biologics are used to treat autoimmune disease patients.  We looked at patients who were prescribed common biologics* (such as Rituximab and IVIG) around or after the time of their disease diagnosis.  Below is a breakdown of the percentage of patients with a particular diagnosis that was prescribed biologic treatment. 

For autoimmune diseases generally, only 5.9% of patients with a diagnosis are prescribed biologics.  For more common diseases like rheumatoid arthritis and lupus, 10.7% and 9.4% of patients are prescribed biologics, respectively.  For diseases like undifferentiated connective tissue disease (an uncommon diagnosis) 8.3% of (and less than 20) patients are prescribed biologics.

Have you received any biologic treatment?  Please email us to share your experience, good or bad.  Once we collect enough stories we will share them on our website or newsletters.  If you have any other other topics of interest, please also reply to this email and we will do our best to search for the answer on the All of Us database. 

Thank you for your continued support. Please join our registry or share it with a friend who has an autoimmune condition. Donations are also greatly appreciated.

* List of biologics included in our search: Rituximab, Ofatumumab, Belimumab, Abatacept, intravenous immune globulin, Golimumab, Certolizumab pegol

Are autoimmune disease patients more likely to have long Covid?

Three years into the pandemic, scientists are still struggling to understand long Covid. Long Covid and autoimmune diseases share many similar symptoms. Some have hypothesized that long Covid is a type of autoimmune disease, but scientists have yet to find autoantibodies associated with long Covid and more study is needed.

Like autoimmune diseases, long Covid tends to disproportionately affect women. Moreover, a study has found that individuals with autoimmune diseases are more likely to experience long Covid. The study found that at 30 days, users who take medications for autoimmune diseases were more than twice as likely to report continued Covid symptoms. In particular, those with autoimmune diseases experienced more severe shortness of breath and fatigue.

The Autoimmune Registry will be rolling out an updated long Covid survey. We want to hear about your experiences with Covid and see how many of our registrants have long Covid. We will publish the results in a future newsletter.  

If you have any questions about autoimmune diseases, please let us know and we will include the answer in our next newsletter!

If you would like to join our efforts and provide information on your autoimmune condition, please join our registry or share it with a friend who has an autoimmune condition. Donations are also greatly appreciated.

The symptoms autoimmune diseases share

While there are different types of autoimmune diseases, they all share the same mechanism of the immune system attacking its own body and cells. This creates an inflammatory response that is similar to what our body does when we have a cold or flu.

Although certain autoimmune diseases target different parts of the body, the inflammation that results is often similar and lead to similar symptoms across multiple autoimmune diseases. These symptoms include fatigue, pain, low-grade fever, trouble concentrating, and numbness and tingling in the hands and feet.

One of the most debilitating symptoms is fatigue, which is common among patients with lupus, multiple sclerosis, type 1 diabetes, celiac disease, rheumatoid arthritis, Sjogren’s, and more. Because many of these autoimmune diseases trigger the same immune system responses, a treatment that targets one of those immune pathways often benefits multiple autoimmune diseases. 

Currently, there is no effective, long-lasting treatment for autoimmune patients experiencing fatigue. That is why it is so important to have an autoimmune disease registry. When we further research for one autoimmune disease, we benefit patients with other autoimmune diseases. 

To join our efforts and provide information on your autoimmune condition, please join our registry or share it with a friend who has an autoimmune condition.  Donations are also greatly appreciated.

How likely are you to have more than 1 autoimmune disease?

Many of those with autoimmune diseases tend to have more than 1. Why is it so common to have multiple autoimmune diseases? Scientists believe that there are likely shared genes and similar molecular mechanisms at play.

One study showed that 34.4% of autoimmune disease patients had more than 1 autoimmune disease. That risk was greater for women and those who have family members with autoimmune diseases. The study also found that patients with Sjogren’s and autoimmune thyroid disease were most likely to have multiple autoimmune diseases.

Looking at our own data at the Autoimmune Registry (ARI), 54% of our registrants have more than 1 autoimmune disease, with 21% reporting 2, 12% reporting 3, 8% reporting 4, and 14% reporting 5 or more autoimmune diseases. 

This is another reason that ARI is creating a registry for all autoimmune diseases. With this data, scientists can do more to find clusters of autoimmune diseases that are more likely to occur together in the same patient.

If you would like to join our efforts and provide information on your autoimmune condition, please join our registry or share it with a friend who has an autoimmune condition.  Donations are also greatly appreciated!

ARI in the All of Us Spotlight: Studying the genes behind autoimmune disease

Autoimmune Registry (ARI) is spearheading the use of All of Us platform to incorporate genome data into our data analysis.  Information on disease prevalence, coupled with lab test results, patient-reported symptoms, and genomic data will let us develop statistical models to predict autoimmune diseases and reduce the time to diagnosis. 

All of Us is a Research Hub established by the National Institute of Health (NIH).  It includes electronic health and genetic information from volunteer participants in order to advance medical research and precision health. ARI can use data collected by All of Us to answer your questions - and help doctors better understand your needs.

If you have a question about autoimmune disease, just contact us here and we’ll use the All of Us data to answer it and include the answer in our next newsletter!

If you would like to join our efforts and provide information on your autoimmune condition, please join our registry or share it with a friend who has an autoimmune condition.  Donations are also greatly appreciated.  To Participate in the All of Us program and share your health records and/or genetic information with the NIH, please sign up here.

Which comes first, RA or Sjogren's?

In Sjogren’s disease, the immune system attacks the body’s moisture-producing glands, leading to systemic symptoms that include dry mouth, dry eyes, fatigue and musculoskeletal pain. In RA, the body attacks the cells that protect joints, leading to pain and swelling that makes it hard for people to walk, or even move. Many people suffer from both diseases, but which one typically comes first?

Using data on participants with both diseases in the Autoimmune Registry, we found that RA came first for 37% of participants, and Sjogren's for 20%. Participants reporting RA before Sjogren's were 34 years old, on average, and they were diagnosed with Sjogren's about 5 years after their RA diagnosis. 

More research is needed, and participants in the Autoimmune Registry are the key to that research.  The Autoimmune Registry has more information, including a full list of symptoms, for Sjogren’s syndrome and rheumatoid arthritis.

Enrolling in the Autoimmune Registry supports research for everyone with RA, Sjogren’s, and over 100 other autoimmune diseases!

Do our genes cause autoimmune disease?

Scientists researching a case of lupus in a 7-year-old girl discovered a genetic mutation that led to her disease.  This is important news, but what does it mean for people with other autoimmune diseases, or even other people with lupus?

The girl in this case had lupus at a very early age, which is not typical.  The mutation in her genes is also unusual.  But while this girl's genes might not be the cause of other lupus cases, the work gives scientists some insights into how autoimmune diseases emerge and it could help discover new treatments for lupus. 

The work also suggests genetic links that connect different autoimmune diseases.  We know, for instance, that those with one autoimmune disorder may likely develop another.  Moreover, patients with various different autoimmune diseases often share common symptoms such as fatigue. 

Researchers are looking for possible genetic connections. The Benaroya Research Institute (BRI) has mapped out common genes that connect 6 different autoimmune diseases, as shown above. By looking for therapies that affect any one of the genes, researchers can find treatments that work for all 6 autoimmune diseases shown.

The overlap among autoimmune diseases suggest they should not only be studied individually, but also collectively.

The Autoimmune Registry facilitates research by connecting patients to researchers. If you would like to join our efforts and provide information on your autoimmune condition, please join our registry or share it with a friend who has an autoimmune condition. Donations are also greatly appreciated.

Why do we cover all Autoimmune Diseases in our Registry?

Many people ask: “Why group all autoimmune diseases together in one registry.  There are over 100 autoimmune diseases, and most people have only one.”

But data show that people with one autoimmune disease often develop another autoimmune disease.  And sometimes these connections are unexpected.  A boy with alopecia - hair loss - regained all of his hair when he went on a gluten-free diet after discovering he had celiac disease.  Also, treatments that work for one autoimmune condition are often discovered to be effective in treating another autoimmune condition. 

The battle against cancer is united through a national cancer registry that collects patient information and shares resources with researchers, but autoimmune diseases have not had that benefit. We believe that an All Autoimmune Registry can help government, pharmaceutical companies, and the public understand the full impact of autoimmune diseases. With better information, we can better channel resources to study and treat all autoimmune diseases.

Please join our registry or share it with a friend who has an autoimmune condition. Together, we can better tackle the underlying causes of all autoimmune diseases.