Transition from Myopathic Changes to Diffuse Myopathy in Three Months
Subject: 20-year-old female, height 165 cm, weight 65 kg. No history of smoking or alcohol consumption; does not consume coffee. Current medications: Soliris, Mestinon. Hello, medical professionals! I’m dealing with autoimmune Myasthenia Gravis along with Cushing's syndrome associated with it, diagnosed in 2022. I've been prescribed Prednisolone since 2021, and as of 2023, my dosage was set at 10 mg. Fortunately, I've recently stopped the medication as of the end of May. For a bit of background, I underwent an electromyography (EMG) on April 14th of this year, which revealed myopathic changes in my proximal left arm. After discontinuing Prednisolone in late May, I also started treatment with Soliris. Just a few days ago, another EMG was performed, and it indicated diffuse myopathy affecting all the muscles on my left side. My healthcare providers are at a loss and are uncertain about the cause. One suggested that the Cushing's might be responsible, but I’m confused as to why myopathy appeared after ceasing Prednisolone. As of June, I'm experiencing weakness on my left side, a poor tolerance for exercise, and ptosis. My neurologist has noted that I’m currently on Soliris, which ideally should be making a difference, and has advised halting Mestinon. However, my situation has not aligned with our expectations; I am still suffering from left side weakness accompanied by diffuse myopathy in that area. I would greatly appreciate any insights or suggestions from fellow doctors. This situation is quite challenging for me, and I would be incredibly grateful for any assistance. Thank you sincerely for your support!
Answers (1)
6/20/2025, 12:10:46 PM
OpenHealth AI
I'm sorry to hear about the challenges you've been facing with your health. It sounds like you're dealing with some complex issues related to autoimmune conditions, and it's understandable to feel confused and concerned about your symptoms. Here's a concise overview of your situation and suggested next steps.
Summary of Key Points
- Current Symptoms: You have experienced a transition from myopathic changes in your proximal arm to diffuse myopathy after stopping Prednisolone, alongside weakness and ptosis.
- Medications and Treatment: You are currently on Soliris and have discontinued Mestinon as per your neurologist’s advice.
- Underlying Conditions: You are managing Myasthenia Gravis and Cushing's syndrome.
Explanation
The progression of symptoms you are experiencing post-Prednisolone may seem perplexing, especially since you anticipated improvement with Soliris, which targets the underlying processes in Myasthenia Gravis. Generally, corticosteroids like Prednisolone can sometimes lead to muscle weakness (steroid myopathy), and the transition you're observing could be linked to the discontinuation of this medication. Cushing's syndrome can also affect muscle health and fatigue due to hormonal imbalances.
It's essential to consider that stopping Prednisolone might have allowed the underlying effects of your conditions (like Myasthenia Gravis and potentially Cushing's) to become more apparent as your body adjusts. The diffuse myopathy could be a reflection of those underlying conditions rather than a direct effect of stopping the medication.
Next Steps
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Symptom Monitoring: Keep a detailed log of your symptoms, noting the timing, severity, and any triggers for your weakness and ptosis. This information can help your healthcare team better understand the evolution of your condition.
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Follow-Up with Healthcare Providers: Since your neurologist has noted a lack of expected improvement, it may be helpful to schedule a follow-up appointment to discuss the latest EMG results. Ask about the potential need for other diagnostic tests or a reevaluation of your current treatment plan, considering your symptoms and the impact of previous medications.
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Enhanced Support and Rehabilitation: Consider engaging with a physical therapist who specializes in neurological conditions. They can guide you through exercises tailored to your capabilities, focusing on maintaining strength and improving tolerance for physical activity.
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Dietary and Lifestyle Considerations: Given the challenges with muscle weakness, ensure you're consuming adequate protein and nutrients that support muscle health. A well-balanced diet is crucial during this time.
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Emotional Support: Coping with chronic conditions can be overwhelming. Connecting with support groups for people with similar experiences or seeking counseling might help you manage any emotional stress arising from your current health status.
I hope this information helps you navigate this difficult time with more clarity and support. Please remember that it’s essential to maintain open communication with your healthcare team, as they are your best resource for personalized advice and adjustments to your treatment plan.
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