Subcutaneous Eczema-Mucus Breakout - Unusual Disease
I have been born with atopic dermatitis. As a kid, I had thick layers of eczema, ashy rash build-up virtually all over my body; this included tissue fluids and pus. For 5 decades I've kept my eczema under control with Fluocinonide ointments, creams, and solutions. Then a few years ago I started to get swelling, tingling, burning sensations in my feet, then legs, then sides of my upper body, then chest, neck, face, and head. Early doctor observations were thought to be "h-pylori", then heart burn, then costochondritis, then lupus, and somewhere in-between all of these, perhaps a psychosis problem. I was placed on several acid reducer pills, Ibuprofens and Tylenols. I've had several bloodwork, X-Rays and MRI's for possible neurological issues, all in which showed unremarkable, none seen, and other negative results. Meanwhile my symptoms were spreading and becoming more intense and chronic - this went on for more than two years and during the height of the pandemic. I finally took it upon myself and studied some medical terminologies that seem to relate to my symptoms, and I reasoned out that I'm having a [deep skin] problem. Reports show that neither X-Rays nor MRI's can easily reveal subcutaneous illnesses and a biopsy must be performed for analysis. So, I went after the services of a dermatologist and dermatopathologist. Finally! The physicians were able to identify "severe eczema breakout all throughout my subdermal tissues. They can see mucin, mucus, filling throughout my sub-skin areas. My current dermatologist thinks the only way to get to the areas between my epidermis and muscles is by introducing hydroxychloroquine-sulfate to the infected areas by way of digestion, so he has me on Hydroxychloroquine tablets. This process can take many months before I can even begin to feel any relief. In the meantime, the burning, tingling, spasmodic swelling, and hugging continues to spread and intensifies. He does not believe anything else could be added to supplement the work of the hydroxychloroquine medication. I'm wondering if he could be lacking some insight into this matter, as this kind of eczematic illness is not too common. Has anyone experienced anything close to what I have been enduring? And was there any successful attempt to reverse this unusual eczematic disorder?
Hey, first off thank you for sharing your experience with us. It sounds like you are going through a really really difficult time with your skin. As my AD colleague, Briana points out, we are not medical professionals but we do provide support in terms of sharing, discussing, and creating a safe space where anyone suffering from eczema can come and vent their frustrations or share tips and tricks on how best to get through the struggle. I personally have no experience with your type of dermatitis and it sounds extremely painful and debilitating. When I was at my worst I sort out lots of different opinions in the medical world. Who knows you may find that one professional that knows how to get you back on track with your healing and then you might be able to control and manage yourself? I went to the famous Harley Street in London where they have some of the very best specialists. It was expensive but it allowed me some breathing space and gave me the chance to gain back control. Good luck and keep us posted!!Thanksagasin for posting! Pete (AtopicDermatitis.net -Site Moderator)
Hi. Briana here, one of the AD moderators. This is a first for me, honestly. You've come to the right place to find support, but because this is uncommon, and I am not a medical professional, I may not be able to find the answer you are looking for. I will tag another moderator to see if they know a bit more on the subject.
I believe the term is spongiotic dermatitis, one of seven different types of dermatitis.
In one of the most recent studies I've found on this, it states in the conclusion...
"Sulzberger, a pioneer of the atopic concept in AD, hypothesized that an unknown “factor X” bridges the gap between the IgE allergy (type I reaction) and delayed-type hypersensitivity (type IV reaction) of eczematous dermatitis in AD [53]. Current understanding suggests that this factor is IgE-mediated delayed-type hypersensitivity. However, the research findings presented in this review need further verification in future studies."
Basically there still needs a lot to be studied. If you wish to see another dermatologist for a second opinion, you are within your right to do so since this is an uncommon diagnosis.
Here is the full article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9223609/I wish there was more I could help with but I am wishing you well and hope there is someone here who may have more of an insight.
