Struggles with Behçet's Disease Flare-Up
A 36-year-old woman with a medical history including Behçet’s disease, bilateral transverse sinus stenosis and thrombosis (with stent placement in 2014), endometriosis, and total laparoscopic hysterectomy (ovaries retained), is currently experiencing a challenging flare-up of her condition. She previously had a VP shunt and an Lp shunt, both of which have been removed, as well as multiple intracranial pressure (ICP) bolts and a total of 34 lumbar punctures. As a child, she also had Kawasaki disease. Her medication regimen includes aspirin (75 mg), azathioprine (75 mg twice daily), gabapentin as needed, eumovate for eczema, infliximab infusions, paracetamol as necessary, ondansetron as needed, and she is currently on a course of 30 mg of prednisone. At present, she is dealing with a relentless flare associated with her Behçet's, anxiously awaiting a callback from her rheumatologist. In addition to azathioprine and infliximab (administered every six weeks), she is taking aspirin to prevent complications related to her stent. For about ten days, she has been on a dose of 30 mg of prednisone, which typically alleviates her flare-ups, yet she continues to feel unwell and is anxious about the possibility of being hospitalized for a methylprednisolone pulse treatment. One of the most distressing symptoms she has encountered in recent years is the resurgence of a pathergy reaction affecting her previous surgical scars, which flared during her recovery. The pain is intense, accompanied by noticeable swelling and redness at the affected areas, resembling her post-operative condition. She is curious whether applying a topical steroid cream such as eumovate might provide relief for this reaction. Despite her suffering, she is hesitant to resort to stronger pain medications due to a prior history of dependence on prescription opioids. However, she is struggling to manage her suffering and sleep while she awaits guidance from her healthcare consultant. She acknowledges the uniqueness of her situation and is thankful for any assistance or advice offered.
Answers (1)
7/18/2025, 9:01:24 PM
OpenHealth AI
I'm sorry to hear that you're experiencing a challenging flare-up of Behçet's disease. This situation can be quite distressing, especially given your complex medical history. It’s understandable to feel anxious while waiting for your rheumatologist's advice.
Main Points:
- Topical Steroids for Pathergy Reaction: Applying eumovate may help reduce swelling and redness from the pathergy reaction.
- Symptom Management: Focus on managing pain and enhancing sleep while considering both your treatment history and current condition.
Explanation:
Behçet's disease can trigger various symptoms, including painful skin reactions like pathergy, which can cause inflammation at previous surgical sites. Using a topical steroid like eumovate may help alleviate these symptoms by reducing inflammation. Before applying, ensure that the skin does not show signs of infection (such as pus or increased warmth), as topical steroids should not be used on infected areas.
Your current medication regimen includes prednisone, which should generally help manage your flare-up, but if you don't feel any improvement, it’s crucial to monitor your symptoms closely. Since you are anxious about stronger pain medications due to previous issues with opioids, I encourage using non-opioid alternatives as much as possible.
Next Steps:
- Try Eumovate: Apply the topical steroid carefully to the affected surgical scars, up to twice daily, as long as there are no signs of infection present.
- Manage Pain: If pain persists, consider taking your gabapentin (as needed) or over-the-counter medications like paracetamol to manage discomfort without escalating to stronger pain medications.
- Sleep Hygiene: Enhance your sleep quality by establishing a calming nighttime routine, keeping your bedroom dark and cool, and limiting screen time before bed.
- Monitor Symptoms: Keep track of the intensity and frequency of your symptoms, especially related to the pathergy reaction, and note any changes after applying the topical medication.
- Stay Informed: Once your rheumatologist gets back to you, discuss the ongoing flare-up, the current management plan, and the potential need for adjustments in medication.
Remember, you are not alone in this, and seeking help from your healthcare team is essential. Your well-being is the priority, so ensure you communicate all your concerns during your next consultation. If you have more questions or need further assistance, don’t hesitate to ask.
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# 7-Month-Old Child with Abernethy Malformation - Exploring Treatment Options ## [7-Month-Old] Identified with Abernethy Malformation (Congenital Portosystemic Shunt) - Treatment Methods? **Age:** 7 months **Gender:** Female **Height:** Age-appropriate **Weight:** Currently 9 kg, was 2.8 kg at birth **Ethnicity:** Asian **Duration of Symptoms:** Present since birth **Location:** Uzbekistan **Pre-existing Health Issues:** Abernethy malformation (congenital portosystemic shunt), liver hemangiomas, chronic jaundice, anemia **Current Treatments:** Supportive management --- ## INITIAL PRESENTATION (June 2025 - July 2025) Our daughter arrived on **June 27, 2025**, presenting with: - Birth weight: **2.8 kg** - Marked jaundice (yellowing of skin and sclera) - Pale or clay-colored stools - **Bilirubin level: 245 μmol/L** (typically <20) An immediate ultrasound indicated multiple liver anomalies, initially thought to be hemangiomas. --- ## FIRST COMPREHENSIVE ASSESSMENT (August 1, 2025 - 1 Month Old) ### Multislice Computed Tomography (MSCT) with 3-Phase Contrast (August 1, 2025): **RESULTS:** - 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7 Months Old) - **Weight:** 9 kg (good growth rate in spite of condition) - **Jaundice:** Continues to be present (yellow skin) - **Stools:** Remain pale/clay-colored - **Development:** Achieving appropriate milestones - **Energy:** Appears to have a good energy level - **Feeding:** Normal appetite --- ## QUESTIONS FOR r/AskDocs We have been informed this is **Type 2 Abernethy malformation** (portal vein present). **Three treatment avenues have been proposed:** ### Option 1: **Endovascular Coil Embolization** (minimally invasive approach) - A catheter is inserted via the leg vein to access the shunt and deploy coils/plugs to close the abnormal vessels - Pros: No surgical incision, minimal discomfort, short hospital stay (2-4 days), no scars, enhanced safety - Duration: 1-2 hours - Recovery: 2-4 weeks for jaundice to show improvement ### Option 2: **Open Surgical Intervention** - An incision in the abdomen to ligate abnormal vessels and redirect blood to the liver - Pros: Direct visualization, effective results - Cons: Surgical scar, longer recovery time (7-14 days in hospital) - Duration: 2-4 hours ### Option 3: **Liver Transplantation** - We have been advised this is not necessary as the portal vein is functional and liver health is improving. --- ## SPECIFIC QUESTIONS TO CONSIDER: 1. **With a functional portal vein (6.1 mm) and improving liver function (ALT normalized), is it advisable to pursue endovascular closure as the preferred treatment?** 2. **Despite ALT levels improving, the bilirubin remains consistently high (242). Should this be a cause for concern? Is there a prospect for it to normalize post shunt closure?** 3. **Are the hemangiomas/nodules (11.6×20.7 mm) linked to the shunt? Will they likely resolve following shunt repair?** 4. **How urgent is the proposed intervention? Is immediate action required, or is there flexibility to wait a few months?** 5. **What complications should we be vigilant for during the waiting period?** 6. **Regarding endovascular closure - what is the average success rate for infants aged 7 months? Are there concerns regarding the shunt size (9.9 mm)?** 7. **The measurement of the portal vein has shown improvement from 6.1 mm to 3.9 mm; should this be perceived as a positive sign or a reason for concern?** 8. **Are there special directives (diet modifications, medications) we should consider while awaiting the procedure?** 9. **Post-procedure, how long should we expect it might take for:** - Normalization of bilirubin levels? - Return of stool color to normal? - Resolution of jaundice? - Regression of hemangiomas? 10. **Can you recommend any specialized centers for pediatric Abernethy malformation treatments? We are located in Uzbekistan but are prepared to travel (to Turkey, Russia, South Korea, etc.)** --- ## ADDITIONAL INFORMATION - No family history of hepatic diseases - Pregnancy and delivery were normal - No additional congenital defects identified - Immunizations up to date - No history of bleeding disorders - No signs indicative of encephalopathy - Child is alert and engaged --- **I can supply actual MSCT images and comprehensive lab reports if they would be of assistance.** We sincerely appreciate any insights you can provide. We are striving to make the most informed decision regarding our daughter’s care and highly value expert medical opinions. **TL;DR:** 7-month-old diagnosed with Abernethy Type 2 malformation (9.9 mm portocaval shunt, patent portal vein). Liver functionality is improving (normalized ALT) while bilirubin remains elevated (242). Evaluating options between endovascular coil embolization and open surgery. Seeking expert advice on optimal treatment strategy and timing.