Each Tuesday, we engage our AiArthritis disease community through social media platforms like Facebook, Instagram, and X. One of our recent community questions generated a significant response, urging researchers to delve into various aspects of AiArthritis diseases. This article delves into the areas community members wish to see researchers study, shedding light on the importance of further investigation in these domains.
This is what our community had to say:
Fatigue Management and its Implications:
Bionicquilter highlights the pressing need for research on fatigue management in AiArthritis patients. Exploring effective strategies to combat fatigue can greatly enhance the quality of life for individuals battling these diseases.
“Bionicquilter - Fatigue and how to manage it”
The Relationship between Diet, Gut Microbiome, and Inflammation:
Livinglifebetter_nat urges researchers to investigate the link between AI arthritis, inflammation, diet, and gut microbiome. Understanding this connection can provide valuable insights into dietary adjustments that may alleviate symptoms and support overall well-being.
“Livinglifebetter_nat - More research on AI arthritis/inflammation and diet/gut microbiome and stem cell therapy”
Unraveling the Enigma of Still's Disease:
Sarahbprado emphasizes the need for research on the origins and nature of Still's Disease. By unraveling its mysteries, researchers can optimize treatment approaches and improve the lives of those affected.
“Sarahbprado - Where it comes from! (Still’s Disease)”
Systemic Effects beyond Joint Issues:
Kakhenry draws attention to the lesser-studied secondary issues associated with AiArthritis diseases. By examining heart inflammation, dental issues related to inflammation, uveitis, and other systemic effects, researchers can provide comprehensive care and treatment options.
“Kakhenry - Systemic effects besides joint issues such as heart inflammation, dental issues related to inflammation, uveitis, and other lesser studied secondary issues”
Exploring Alternatives to NSAIDs:
Marie Eccles advocates for research on alternatives to nonsteroidal anti-inflammatory drugs (NSAIDs) for individuals who are unable to tolerate them. Exploring viable alternatives can offer relief to those who cannot benefit from conventional treatments.
“Marie Eccles - Alternatives to NSAIs for people like who can't take them.”
Advancement in Stem Cell Treatments:
Karen Birch raises concerns about the limited availability of stem cell treatments with minimal side effects. Intensive research and development in this sphere can pave the way for accessible and effective stem cell therapies to relieve the burdens of AiArthritis diseases.
“Karen Birch - #1 Actual cure / causes. #2 Stem cell treatments they actually end up using & we know have extremely mild to no side effects (fatigue, mild fever & headache day after treatment - if that) that actually fix ALL our issues from the disease not mask it & give us more problems from the medications.(this exists I've had it in India why it's not used is way beyond belief & actually as a patient of 28 yrs disgusts me. It safely exists from placentas they just dispose of after full term births, but we can't access it without paying an absolute fortune in another country) Not use the studies to then make chemicals to put in our bodies like biologicals were from the last studies in 90's.”
Understanding Never-Ending Pain and Fatigue:
Donna Donzi calls for research on the relentless pain and fatigue experienced by AiArthritis patients. By gaining a deeper understanding of these symptoms, researchers can develop targeted interventions that enhance patient well-being.
“Donna Donzi - The never-ending pain and fatigue.”
The Impact of Stress on Disease Flares:
Jenny Forschen highlights the importance of studying stress levels and their correlation with disease flares. Examining the impact of extreme stress and traumatic events on AiArthritis can lead to improved management strategies and enhanced patient outcomes.
“Jenny Forschen - Stress levels and how they correlate to flares - especially periods of extreme stress or a history of traumatic events.”
Synthesizing Hormones to Alleviate Symptoms:
Laura Wohl Torchinsky shares her personal experience of symptom relief during pregnancy due to hormonal changes. Exploring the possibility of creating synthetic hormones can potentially unlock alternative treatment options for individuals with AiArthritis.
“Laura Wohl Torchinsky -I’ve had RA for 37 years. Each time I was pregnant, most of my symptoms basically vanished due to hormonal changes. Very shortly after, I had major flares after pregnancy. Why can’t the hormones produced during pregnancy be made synthetically?”
Exploring the Connection between EDS and RA:
Stephanie Schmid-Falcon sheds light on the complex relationship between Ehlers-Danlos Syndrome (EDS) and Rheumatoid Arthritis (RA), specifically the role of adrenaline and mast cell activation. Investigating this connection can unravel valuable insights into disease mechanisms and potential therapeutic targets.
“Stephanie Schmid-Falcon - Yesterday I saw a geneticist to be evaluated for Ehlers-Danlos following a diagnosis of Chiari malformation (EDS is a common comorbidity with Chiari). I meet the diagnostic criteria and will do some genetic testing BUT a lot of things overlap with RA so it’s tricky. This geneticist has studied a lot of EDS patients and had a lot of good info about the role of adrenaline and mast cell activation. He said that only about 11% of the female patients he’s studied also have autoimmune diseases like arthritis and that the connection isn’t well understood. So, the connection between RA and EDS, especially the role of adrenaline and mast cells.”
Managing Comorbidities:
Lisa Chandler advocates for research addressing the comorbidities associated with AiArthritis. By understanding the interplay between RA and conditions like sleep apnea, migraines, high cholesterol, and GERD, researchers can formulate comprehensive treatment approaches.
“Lisa Chandler - Comobilitities and how to treat them. For example, if Ra increases the risk of sleep apnea, migraines, high cholesterol, or GERD what is the best way to treat them all? If biologic raises bad cholesterol does it need to be treated differently than regular high cholesterol?”
Unraveling the Mystery of Chronic Fatigue:
Jennifer Counce emphasizes the importance of studying chronic fatigue experienced by individuals with AiArthritis diseases. Shedding light on the underlying causes and effective interventions can significantly improve the quality of life for patients.
“Jennifer Counce - The chronic fatigue!”
The Impact of RA Medications on Vaccination:
Cynthia Cole Hart raises concerns about the immune response to vaccines for those taking RA medications. Research in this area can provide crucial insights into the safety and effectiveness of vaccinations to protect individuals with compromised immune systems.
“Cynthia Cole Hart - If I am protected when I take vaccines( etc.. flu, pneumonia, shingles, tetanus) due to RA meds shutting immune system down.”
The Role of Diet in AiArthritis:
Jenny Forschen calls for research on the impact of diet on the course of AiArthritis diseases. Understanding the influence of dietary factors can empower individuals with valuable information to manage their symptoms effectively.
“Jenny Forschen - The effect of diet on the overall course of the disease. If anything helps or hurts.”
Identifying Triggers for Prevention:
Jacqui James highlights the importance of identifying triggers for AiArthritis diseases to prevent their onset. Investigating potential triggers and management strategies can help individuals mitigate their risk and maintain a higher quality of life.
“Jacqui James - What triggered it in the first place? Is there a way to manage some triggers to prevent it taking hold?”
Understanding the Impact on Muscles, Ligaments, and Tendons:
Peta Gourlay emphasizes the need for research on the effect of AiArthritis on muscles, ligaments, and tendons. This knowledge can significantly contribute to developing targeted rehabilitation programs and improving overall patient outcomes.
“Peta Gourlay - Effect of AiArthritis on muscles, ligaments and tendons - would help so much with rehabilitation if you could know how they're being affected”
Exploring Connections between RA and Nonunions:
Cheryl Pawlyna proposes investigating the link between RA and nonunions, which are broken bones that do not heal. Unraveling this connection can assist in taking proactive measures to ensure proper bone healing in individuals with AiArthritis.
“Cheryl Pawlyna - I wonder if anyone's studied the link between RA and nonunions (broken bone that does not heal).”
The Systemic Effect of Autoimmune Arthritis:
Betsy Wilbourne Barnacascel brings up an interesting point about educating primary care doctors and specialists who are not rheumatologists on the systemic effects of autoimmune arthritis. This highlights the need for widespread awareness and understanding of this condition beyond the realm of specialized healthcare providers.
“Betsy Wilbourne Barnacascel - The systemic effect of autoimmune arthritis. I feel like I am educating my primary care doctors and specialists who aren’t rheumatologist. Another interesting area would be how the glp-1 medications can help the inflammation of RA in addition to the benefits of weight loss has on these diseases. My A1C had climbed up to pre-diabetic because of steroids. I have lost 15 lbs and returned to a normal A1C. I have been told there are promising benefits to decrease inflammation as well. Not seen that yet but only been on it 2 months.”
The Systemic Effect of Autoimmune Arthritis:
Betsy Wilbourne Barnacascel brings up an interesting point about educating primary care doctors and specialists who are not rheumatologists on the systemic effects of autoimmune arthritis. This highlights the need for widespread awareness and understanding of this condition beyond the realm of specialized healthcare providers.
“Betsy Wilbourne Barnacascel - The systemic effect of autoimmune arthritis. I feel like I am educating my primary care doctors and specialists who aren’t rheumatologist. Another interesting area would be how the glp-1 medications can help the inflammation of RA in addition to the benefits of weight loss has on these diseases. My A1C had climbed up to pre-diabetic because of steroids. I have lost 15 lbs and returned to a normal A1C. I have been told there are promising benefits to decrease inflammation as well. Not seen that yet but only been on it 2 months.”
The Impact of GLP-1 Medications on Inflammation:
Additionally, Betsy mentions the potential benefits of GLP-1 medications in managing the inflammation associated with rheumatoid arthritis (RA). Coupled with the positive effects of weight loss on this condition, exploring the link between GLP-1 medications, inflammation reduction, and weight loss could pave the way for innovative treatment options.
Addressing Fatigue and Hormonal Changes in Women:
Chp_cdn_traveller brings up two crucial points that deserve attention – fatigue and hormonal changes in women in their 50s. Understanding the underlying causes of fatigue associated with autoimmune arthritis and implementing strategies to overcome it will greatly enhance the quality of life for individuals battling this condition. Moreover, exploring the connection between hormonal changes and the incidence of diagnosis could open doors to effective resolution strategies.
“Chp_cdn_traveller - Two things: 1.) Fatigue - why and how to overcome it 2.) Why women in their 50’s have such a high incidence of diagnosis and connection to hormonal changes and how to resolve it.”
Exploring Arthritis and Its Links:
Rsiwellness highlights the interplay between arthritis and various factors such as hormones, stress, diet, vitamin and mineral deficiencies, exercise, and toxins. Taking a comprehensive approach to address these links will contribute to a more holistic understanding of arthritis and pave the way for personalized treatment plans.
“Rsiwellness - The links between arthritis and: Hormones, stress, diet, vitamin and mineral deficiencies, exercise, toxins. “
Unraveling the Genetic Aspect of Arthritis:
Thatjewgirllew raises an intriguing question about the genetic aspect of arthritis and the uniqueness of her own condition. While both her mother and grandmother have forms of arthritis, she wonders why hers is considered "rare." Further exploration into the genetic factors contributing to different types of arthritis could provide invaluable insights and potentially lead to tailored treatment approaches.
“Thatjewgirllew - The genetic aspect of it- both my mother and her mother have forms of arthritis, but why is mine so”rare”? #aosd #stillsdisease #arthritis #raredisease #chronicillness #autoimmunedisease”
The Brain and Arthritis:
@stacystylesoul voices concerns about the potential inflammation or swelling in the brain associated with arthritis. As individuals age, the impact of arthritis on the brain becomes an area of interest and calls for in-depth studies. Understanding the intricacies of brain involvement in arthritis could lead to proactive measures to mitigate potential risks.
“@stacystylesoul I would also love to see studies on the brain, do we have inflammation or swelling in the brain? That scares me as I age.”
By addressing these research areas, we can expand our understanding of AiArthritis diseases and potentially improve the lives of those affected.
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