OpenHealth Q&A

Persistent and Debilitating Rash: Not Just Grover's Disease?

I am a 52-year-old woman diagnosed with several serious conditions including seronegative Myasthenia Gravis, Lupus SLE, Sjögren's Syndrome, Ehlers-Danlos Syndrome (hypermobility), and POTS. I recently underwent shoulder surgery on May 27, 2025, and my treatment plan, supervised by a new neurologist, was adjusted due to my history of stroke in 2007. My IVIG therapy was halted, and my CellCept dosage was increased from 500 ng to 2000 mg, alongside a regimen of 15 mg of prednisone and 150 mg of Mestinon. I am also on chronic morphine for spine instability, awaiting fusion surgery, and taking Fludricortisone 1 mg, as well as Trazodone 100 mg for insomnia and Tizanidine 50-100 mg as needed. Shortly before my surgery, a rash developed which I initially attributed to the procedure itself. However, I also experienced sudden vision loss, and an ophthalmologist evaluated me on April 25. As time passed, the rash has only intensified and has become unbearable, particularly when exposed to heat. I initially thought it was Grover's disease. After being immobilized post-surgery and dealing with neck pain, I recently regained the ability to move, but the rashes are more excruciating than anything I underwent during my surgery. I've tried numerous topical treatments, including clobetasol propionate, trimilicone, calcipotriene, and hydrocortisone, none of which have provided relief. Yesterday, I had an appointment with a dermatologist. Unfortunately, he focused primarily on my neck, disregarding the different areas like my chest, which I believed were indicative of Grover's. Additionally, my face is in severe pain; applying any product feels akin to harsh razor burn with an overwhelming sensation of heat radiating from my face, neck, and chest. Living in Florida complicates matters as I cannot step outside without exacerbating the condition. My dermatologist suspects a connection to CellCept and possible photosensitivity, yet I question this because I have been mostly indoors for nearly seven weeks. I also have redness and rashes under my breast, raising doubts about the photosensitivity claim since I am not exposed to sunlight. The only medication I’ve been provided is Zyrtec, which unfortunately has made my Sjögren's symptoms worse without noticeably affecting the rash. I thought I might be dealing with two distinct issues: Grover's disease on my chest and eczema on my neck, as moisturizing creams seemed to help with the neck patchiness. However, nothing alleviates the discomfort on my face. While it may not appear rashy, it feels inflamed and painful—symptoms reminiscent of classic photosensitivity, even though my neurologist has no plans to adjust my CellCept prescription. I find myself at a loss for effective treatment amidst this uncertainty regarding my condition. Today, I received another dose of trimilicone ointment, but my primary doctor has not engaged, despite being informed that the dermatologist would reach out to the neurologist. After using trimilicone sporadically for two months, I continue to suffer, feeling that my situation is more severe than it may seem from the outside. Phrases like "sunburn" don’t resonate with my experience since I’m seldom in the sun; rather, the sensations feel like a brutal combination of sunburn, razor burn, and acid irritation. With a history of joint dislocations and subluxations over the past three decades, I am accustomed to pain. However, this experience is distinctly different and intensely anxiety-inducing. I have attempted to share images to illustrate my condition, but technical issues have hindered my efforts. I hope that I can effectively communicate what I am experiencing soon.

Answers (1)

7/11/2025, 10:01:38 PM

OpenHealth AI

I'm truly sorry to hear about the distressing experiences you're going through with your rash and the concerning symptoms. It sounds quite challenging, especially since you already deal with multiple serious health conditions. Let’s break this down and focus on what you can do to improve your situation.

Main Points:

1. Your rash may be related to multiple factors including medication side effects, potential allergic reactions, or underlying conditions.
2. Immediate relief strategies may help manage your discomfort at home while seeking further evaluations.

Explanation

Given your history of complex medical conditions, it’s understandable to feel overwhelmed with how these relate to your current rash and discomfort. The use of medications like CellCept can lead to various skin reactions, and your claims of photosensitivity may still hold merit even with limited sunlight exposure, as systemic medications can influence skin responses in ways that aren't always visibly apparent. Moreover, the pain and sensation you experience may not just be about the appearance of the rash, but also nerve involvement or underlying inflammatory responses linked to your autoimmune conditions.

Next Steps

1. Intensify Symptom Management:

   • Moisturizing: Since you mentioned that moisturizing creams help with the neck, continue using gentle, fragrance-free moisturizers frequently throughout the day on all affected areas. Look for creams with ingredients like hyaluronic acid or ceramides, which may provide hydration without irritation.
   • Cool Compresses: Applying cool, damp cloths to the affected areas can provide immediate relief from the burning sensation. Try this multiple times a day, especially after exposure to heat.
   • Antihistamines: You've mentioned Zyrtec worsening Sjögren's symptoms. If possible, consult with your healthcare team about trying a different oral antihistamine or possibly using topical antihistamines that may be less irritating.
   • Avoid Known Irritants: Make sure to eliminate potential irritants like heavily scented or harsh soaps and fabrics, and opt for loose-fitting, soft clothing.

2. Monitor and Record Symptoms:

   • Keep a daily log of your rash's progression, including new symptoms, triggers (such as heat or stress), and any changes with products you use. This detailed information can be crucial for your healthcare providers to understand and adjust treatment as needed.

3. Follow Up Health Care Coordination:

   • Given the communication gap you've faced between specialists, consider initiating a follow-up call with your primary care physician or the dermatologist’s office to express the urgency of a coordinated approach. Ensure they know how severe the sensations and discomfort are, as well as any new developments or concerns.
   • If you find it hard to describe your pain and symptoms, printing your log or possibly including photographs when you can might help articulate your experience in future appointments.

4. Seek Further Evaluation:

   • If symptoms do not improve with these strategies or worsen, you may want to consider seeking a second opinion or specialist consultation in dermatology, particularly someone with experience in autoimmune skin disorders.

Your experience is indeed valid and your pain deserves attention. By taking these structured steps, you’re advocating for your health while managing your current discomfort as best as possible. Please keep me informed about your progress, and feel free to reach out for any additional questions.