Patient-Friendly News You Can Use

If you have a rheumatic or musculoskeletal disease — or are a caregiver for a loved one with these conditions — being engaged in your care means staying up to date on research about your condition. With that in mind, we’ve pulled together the latest health-related news and patient-centered studies to keep you informed so you can better manage your condition and advocate for better care.

This month, we delve into several studies that examine why women might consider taking action to lower their risk of developing rheumatoid arthritis, recommendations to better manage fatigue, the predictability of osteoporosis, non-pharmacological management of systemic lupus erythematosus and systemic sclerosis, the link between psoriasis and psoriatic arthritis, and the effectiveness of COVID-19 vaccinations against the diagnosis of a post-COVID condition.

What’s the Connection Between Hormones and RA?

As if hot flashes from hormonal changes aren’t challenging enough. A recent long-term study involving 223,526 women from the UK Biobank suggests significant links between certain hormonal and reproductive factors and an increased risk of rheumatoid arthritis (RA). In fact, researchers found that women face a four to five times higher likelihood of developing RA before age 50 than men, and the risk remains twice as high between ages60 and 70. Additionally, RA seems to have a more significant physical impact on women than on men.

The study found that early menopause (before 45), the use of hormone replacement therapy (HRT), having four or more children, and having fewer than 33 reproductive years are associated with an elevated risk of RA. Other factors, such as starting menstruation after 14 years, undergoing a hysterectomy or oophorectomy (an operation to remove one or both ovaries), and the duration of HRT use were also linked to increased risk.

The study underscores the importance of considering these factors in women diagnosed with RA. Could personalized intervention measures help mitigate the risk of developing RA? It’s important to keep in mind that this is an observational study and cannot definitively establish cause and effect.

Why might this matter to you? If you or someone you know fits any of the criteria above, it’s vital to be aware of their potential risks and to prioritize regular wellness visits with health care providers. Early intervention could potentially reduce the risk of developing RA.

News Alert: Fatigue Is Finally Being Taken Seriously

Yes, you read that correctly. The chronic community has been candid about the profound impact of fatigue for decades. Certainly, it’s impossible to measure the combined number of days we’ve lost due to fatigue. People living with inflammatory rheumatic or musculoskeletal disease (RMD) know all too well about the monster named fatigue and how it leaves us feeling beyond exhausted — physically and mentally — helpless and hopeless.

The European Alliance of Associations for Rheumatology (EULAR) published new recommendations on managing key fatigue symptoms. The task force decided upon four overarching principles and four recommendations that benefit patients and physicians.

Why might this matter to you? These are important aspects of these guidelines that patients need to know:

1. Health professionals should incorporate regular assessments of fatigue severity, impact, and coping strategies. Ask your doctors about assessing your fatigue.
2. Customized physical activity interventions should be offered to people with RMDs and fatigue as part of their clinical care. What physical activity interventions are available to you?
3. Individuals with RMDs and fatigue should be offered access to educational programs designed to help them understand and manage their condition. Are there free programs you can access through your health care team to help you manage fatigue?
4. Any increase or persistence of fatigue should prompt a check on the inflammatory disease activity, and treatment changes may be considered if needed. Do you track your fatigue levels and discuss persistent fatigue with your health care team?

Is it Possible to Predict Osteoporosis?

In a recent study, machine learning models used data from a group of Korean patients with rheumatoid arthritis (RA) to make predictions about the presence of osteoporosis, a disease often found in people with RA that weakens and makes bones fragile.

Researchers used machine learning algorithms on  a comprehensive database called KORONA, which included information from over 5,000 patients. The machine learning models looked at various factors, including age, body mass index, menopause, and even monthly income to predict who might be at risk for osteoporosis. The computer programs did a good job, with one called logistic regression being the most accurate. (Logistic regression is a statistical analysis model that uses math to predict an outcome where there are only two possible outcomes.) The study showed that machine learning models can be a helpful tool in assessing the likelihood of someone with RA having osteoporosis.

Why might this matter to you? As patients, we are always looking for ways to avoid developing another condition, or comorbidity. Machine learning might be the tool that helps patients better understand their possible health outcomes and work with their doctor to take steps to protect against preventable conditions like osteoporosis.

EULAR Recommendations for Managing Lupus

Rheumatologists, health care professionals, and patients worked together on a task force through the European Alliance of Associations for Rheumatology (EULAR) to write recommendations for the non-pharmacological management of systemic lupus erythematosus (SLE) and systemic sclerosis (SSc). The recommendations will guide health care professionals and patients toward a holistic and personalized management of SLE and SSc. SLE is a chronic, inflammatory, autoimmune disease that can affect all organs and tissues. SSc is a rheumatic, autoimmune disease characterized by vasculopathy and fibrosis of the skin and visceral organs.

What is recommended? The general advice for SLE and SSc can be condensed into a few key points centered on non-drug approaches that enhance quality of life:

• Provide patients with education and support for self-management so that patients are empowered to monitor their health and to make lifestyle changes as needed.
• Consider avoiding cold exposure, especially for those with SSc, to prevent Raynaud’s phenomenon.
• Consider incorporating physical exercise into the routine. Stretching and yoga, for example, can help increase flexibility, ease joint stiffness, improve breathing and energy levels, and alleviate stress.
• Additional approaches include paraffin baths, acupuncture, electrical nerve stimulation, hydrotherapy, and manual lymph drainage.

According to the EULAR task force, successful implementation of the recommendations combined with proper medication is likely to result in improved quality of life for people with SLE and SSc.

Will You Get Psoriatic Arthritis if You Have Psoriasis?

A recent study involving 330 patients over 10 years identified four key factors that might help predict if someone with psoriasis could develop psoriatic arthritis. These included being female, having affected nails, experiencing severe psoriasis, and receiving oral systemic therapy. Interestingly, the amount of time someone has had psoriasis doesn’t seem to increase the risk.

About 25 percent of the participants developed psoriatic arthritis during the study, with an average diagnosis age of 54.2 years. The findings suggest that increased screening for these specific features could lead to earlier diagnosis and treatment for patients.

Why might this matter to you? Regular visits to the doctor can be helpful for patients, as it might lead to finding any issues earlier and getting treatment sooner.  It’s crucial to get the right diagnosis quickly because untreated inflammation can cause severe joint damage. So, finding out what’s going on and starting treatment as soon as possible is really important. Regular check-ups with your doctor can help catch and address any problems early. Learn more about the stages of psoriatic arthritis here.

COVID-19 Vaccinations Shown to Reduce Long COVID

There is a strong association between receiving the first three doses of COVID-19 vaccinations (initial two doses plus one booster shot) before getting COVID-19 and a diminished risk of being diagnosed with a Post-COVID Condition (PCC). A new study of over 580,000 people in Sweden shows how important it is to get vaccinated against COVID-19 in the beginning to help reduce the after-effects of the infection in the community. Of the 299,692 people vaccinated before getting COVID-19, 0.4% (or 1,201 people) had a PCC a month or more after COVID-19 compared to 1.4% (or 4,118 people) who had PCC a month or more after COVID-19. Symptoms of PCC, or long COVID, may include fatigue, chest tightening, difficulty breathing, cognitive impairment, headache, muscle pain, and cardiac abnormalities such as chest pain and palpitations. The study period was December 27, 2020 through February 9, 2022.

Some key points from this study include:

• Men showed a higher vaccine effectiveness than women (≥1 dose: 64% and 54%, respectively).
• The highest vaccine effectiveness by age group was shown in those aged 55-64 years (≥1 dose: 69%) and the lowest in those aged 18-34 years (≥1 dose: 28%).
• Among the people in the study, those who didn’t get vaccinated had nearly four times as many PCC diagnoses compared to those who received the vaccine before getting infected (1.4% versus 0.4%).

Why might this matter to you? Getting vaccinated and boosted may reduce your risk for developing “long COVID” or PCC, which include symptoms like fatigue, difficulties breathing, cardiac events, and brain fog.

Want to Get More Involved with Patient Advocacy? 

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.