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2024-04-02 - Q1 2024 CIDP

Apr 02, 20249 min read

Highlights to Add

title: "Log into Facebook"
image: "https://static.xx.fbcdn.net/rsrc.php/y1/r/4lCu2zih0ca.svg"
description: "Log into Facebook to start sharing and connecting with your friends, family, and people you know."
url: "https://www.facebook.com/groups/CIDPSupport/posts/3184723618502819/?__cft__[0]=AZX24STEC9RHrjbpaCwrJIDFhuF6o2kfewYF5UpUEc0gHTFj9dGfWRptTNsy2BtvF36c2s97jze8aU8xoSgU_CQ-fSdx8jVIqWq2dw4XRVsnSsTYbWsiDaxY33eOl4OJnh-x2SsRI3nQOaheT_nQUlGj4FKKP27jaaxf6ZcAPLsyI6o3W0mCEYZfDUaDJVnmqnA&__tn__=%2CO%2CP-R"
title: "Log into Facebook | Facebook"
image: "https://www.facebook.com/images/fb_icon_325x325.png"
description: "Log into Facebook to start sharing and connecting with your friends, family, and people you know."
url: "https://www.facebook.com/groups/CIDPSupport/posts/3186626728312508/?__cft__[0]=AZVc9lyCsFed-OV20yU4al5THQXWg1gw7POHiHL5JgA6b54nYNXbLEuDMlAfVa2fdPvsUqhztIZte97JamIhlJ92Oli_BkbCShwqyqpNDdLgWqtZl7eX3it5II3kEr4K3bTzp9Y35KasCwT4iTL1QBZog0-Tkvr8nl-bRmLEJWEVmx8YBeX7lvTZQxJ9C_oh7iM&__tn__=%2CO%2CP-R"
title: "Log into Facebook | Facebook"
image: "https://www.facebook.com/images/fb_icon_325x325.png"
description: "Log into Facebook to start sharing and connecting with your friends, family, and people you know."
url: "https://www.facebook.com/groups/1750534428588419/search/?q=shining#"

Tasks

  • Add Shining Through CIDP Facebook ✅ 2024-04-02
  • [>] LinkedIn Data Pull (Moved to CIDP Reporting Process)
  • Shining Through CIDP Quid Pull ✅ 2024-04-02

IVIG AI Summary

The discussions about IVIG within these posts cover a range of themes related to its use, effectiveness, and the experiences of individuals undergoing treatment for conditions like CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), GBS (Guillain-Barré Syndrome), and other autoimmune disorders. Key themes include:

  1. Effectiveness and Variability of Response: Many individuals report varying degrees of effectiveness with IVIG treatments, with some experiencing significant improvements in symptoms such as weakness, numbness, and mobility issues, while others find little to no benefit. The variability in response highlights the complex nature of autoimmune disorders and the challenge in finding effective treatments.

  2. Side Effects and Management: Side effects of IVIG treatments are a common concern, with individuals reporting issues such as fatigue, headaches, nausea, and more severe reactions in some cases. Discussions often focus on strategies to manage these side effects, including hydration, adjusting the infusion rate, and using premedication like antihistamines and acetaminophen.

  3. Access and Insurance Challenges: The high cost of IVIG treatments and difficulties in obtaining insurance approval are significant concerns. Individuals share their experiences and frustrations with navigating insurance processes and the financial burden associated with long-term treatment.

  4. Alternative Administration Methods: Some individuals discuss the use of subcutaneous immunoglobulin (SCIG) as an alternative to IVIG, noting preferences for one over the other based on side effects, convenience, and effectiveness. The choice between IVIG and SCIG appears to be influenced by personal experiences, medical advice, and individual health conditions.

  5. Technical and Practical Aspects of Treatment: Discussions also touch on the technical and practical aspects of receiving IVIG, such as the use of ports for those with difficult venous access, the duration and frequency of infusions, and the logistics of receiving treatment at home versus in a medical facility.

  6. Emotional and Psychological Impact: The emotional and psychological impact of living with chronic autoimmune disorders and undergoing treatments like IVIG is evident in many posts. Individuals express feelings of hope, frustration, fear, and gratitude, highlighting the importance of support from healthcare providers, family, friends, and online communities.

  7. Seeking and Sharing Advice: The posts are filled with individuals seeking advice on managing their conditions, optimizing treatment outcomes, and dealing with side effects. There is a strong sense of community, with people sharing their personal experiences, offering support, and providing practical tips to help others navigate their treatment journeys.

  8. Diagnostic Challenges and Disease Progression: Some discussions reflect the challenges in obtaining a clear diagnosis, with individuals experiencing shifts in their diagnosis from one autoimmune disorder to another. The progression of symptoms and the impact of treatments on disease progression are also common topics of concern.

These themes underscore the complexity of treating autoimmune disorders with IVIG, the diverse experiences of individuals undergoing treatment, and the value of community support and shared knowledge in navigating these challenges.

Rituxan AI Summary

The discussions about Rituxan (rituximab) within these posts cover several key themes related to its use in treating autoimmune conditions such as CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) and other related disorders. These themes include:

  1. Effectiveness and Response Time: Many individuals share their experiences with the effectiveness of rituximab, noting improvements in symptoms such as mobility, strength, and reduction in neuropathy. However, there’s a consensus that it takes time to see the effects, with several mentions of a 3-6 month period before noticeable improvements are observed.

  2. Comparison with Other Treatments: Rituximab is often discussed in the context of its use after other treatments like IVIG (Intravenous Immunoglobulin) and steroids have failed or shown limited effectiveness. Some individuals report switching to rituximab due to lack of improvement with IVIG or because of side effects from other treatments.

  3. Insurance and Cost Concerns: The high cost of rituximab and challenges in getting insurance coverage are significant concerns for many. There are discussions about the financial burden of treatment and the process of getting insurance approval.

  4. Side Effects and Administration: While some individuals report minimal to no side effects from rituximab, others express concerns about potential long-term risks and side effects, likening the treatment to chemotherapy. Questions about how rituximab is administered and the experience of receiving treatment are also common.

  5. Disease Progression and Treatment Goals: There’s a focus on the goal of rituximab treatment to stop further damage and demyelination, with many seeking to understand whether rituximab can not only halt disease progression but also lead to recovery of lost functions. Stories of significant recovery and improvement offer hope to those considering or starting rituximab.

  6. Personal Stories and Seeking Advice: The posts are filled with personal stories of dealing with CIDP and other conditions, with individuals seeking advice on rituximab treatment, sharing their experiences, and asking about others’ experiences. These stories highlight the diverse responses to rituximab and the search for effective treatment options.

  7. Combination with Other Therapies: Discussions include the use of rituximab in combination with other treatments, such as continuing IVIG alongside rituximab or using plasmapheresis. This reflects the complex nature of treating autoimmune disorders and the need for personalized treatment plans.

  8. Emotional Support and Hope: The emotional impact of dealing with chronic conditions and the search for effective treatments is evident. Many posts offer support, share success stories, and provide encouragement to those starting rituximab, emphasizing the importance of hope and persistence.

These themes underscore the complexity of treating autoimmune conditions with rituximab, the variability in individual responses to treatment, and the importance of community support and shared experiences in navigating these challenges.

Plasmapherisis and Plasma Exchange AI Summary

The discussions about plasma exchange and plasmapheresis within these posts highlight several key themes related to their use in treating conditions like Guillain-Barré syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). These themes include:

  1. Effectiveness of Treatment: Many individuals report significant improvements in their condition after undergoing plasma exchange or plasmapheresis, especially when other treatments like IVIG (Intravenous Immunoglobulin) or medications have failed to produce desired results. There are accounts of regained mobility, reduced numbness, and overall betterment of symptoms.

  2. Comparison with IVIG: There’s a notable comparison between the effectiveness of plasma exchange and IVIG treatments. While some individuals find IVIG helpful, others do not respond well and see better results with plasma exchange. This highlights the variability in patient responses to different treatments for similar conditions.

  3. Hospital Transfers for Treatment: The need to transfer hospitals to receive plasma exchange treatment is mentioned, along with concerns about the logistics of such transfers, including not being allowed to accompany patients in ambulances. This underscores the challenges and anxieties faced by patients and their families in accessing specialized care.

  4. Side Effects and Procedure Details: Posts discuss the procedural aspects of plasma exchange, such as the need for a port in the neck or chest for access. Side effects like tiredness and headaches are mentioned, along with advice on keeping fluid levels up to minimize these effects. The importance of ensuring plasma is warm during the procedure is also highlighted.

  5. Combination with Other Treatments: Some individuals discuss using plasma exchange in combination with other treatments, such as Rituximab, to manage their condition. This reflects a multi-modal approach to treatment, especially for complex or refractory cases of autoimmune disorders.

  6. Cost and Accessibility Concerns: The cost of plasma exchange is mentioned as a significant barrier to accessing this treatment option. This points to broader issues of healthcare accessibility and the financial burden of managing chronic conditions.

  7. Personal Experiences and Support: The posts are rich with personal experiences and expressions of hope and support for others undergoing similar challenges. These narratives provide insight into the emotional and physical journey of dealing with severe autoimmune disorders and the search for effective treatments.

  8. Seeking Advice and Shared Experiences: Individuals seek advice and share their experiences regarding the effectiveness of plasma exchange, looking for reassurance and information from others who have undergone similar treatments. This highlights the value of community support and shared knowledge in navigating complex health decisions.

Overall, these discussions reflect the complexities of treating autoimmune conditions like GBS and CIDP, the variability in treatment responses, and the importance of patient support networks in sharing experiences and information.

Slide Pull Outs

We randomly sampled 70 threads, including their comments (450+ comments), from CIDP Facebook Groups* in Q1 2024. 60% of mentions are treatment-related, often discussed alongside symptoms. Patients reported 30+ symptoms experienced while living with CIDP and/or undergoing treatment. 25+ co-occurring and comorbid conditions were identified within conversations.

25+ different treatments were identified in our sample data. IVIG comprised of 57% of conversations, with patients sharing both positive and negative experiences. Key themes discussed within IVIG conversations: Effectiveness and variability of response, side effects, and management. Access and insurance challenges (high cost). Alternative administration methods, including SCIG.

Rituxan (rituximab) represented 15% of conversations. Key themes discussed within these conversations: Effectiveness and response: Many individuals note improvements to mobility and strength, but consensus is that it takes up to 3-6 months before improvements are observed. Comparison to and use alongside other treatments, including IVIG. Some individuals report switching to Rituxan from IVIG due to poor efficacy or side effects, while others receive both treatments. Insurance and cost: Some patients have challenges getting insurance coverage for Rituxan.

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