Rheumatology Subcutaneous SclerEdema Mucinosis
I'm looking for a forum on Rheumatology. Is there one similar to this forum? I have SclerEdema (not scleroderma) with Mucinosis, visible only by subdermal biopsy, no indication on epidermis. I'm also non-diabetic since my last several years of A1-C being from 5.4 to 5.6. Tried Valacylcovir, Cyclosporine, Hydroxychlorine with no improvement. Now doing five month (three sessions a week) Ultraviolet B. And I'm receiving desensitizing shots every two weeks. I'm Atopic, reacting and flaring up to virtually everything, including atmospheric pressure changes, so I'm being profusely secreted with excessive mucin deposition from head to foot, more severely upper body, neck, and, face and entire head. I can also feel some activity involving internal organs. Other than that, my vitals are within normal range. Can I get some advisement here?
I experience some of that myself. When i do to much my nose just starts running like a faucet and ai start draining mucus everywhere, so that can be annoying as you well know. Also, pressure changes and weather affect me for sure, more than others with RA, I seems. Especially cold and humidity, those two seem to be my undoing so I try to keep it dry (but not bone dry as the problems start up again), and I try not to run the AC in summer too cold, especially at night when sleeping. I think if you want it may be time to try for a second opinion? I know it's a hassle but whatever you decide we will be here to help. Keep on keepin' on, DPM
Hi
. I have to admit this is not a condition I was very familiar with. Mind if I ask if yours is associated with a connective tissue disorder? I ask because scleredema can be associated with a number of conditions and the connective tissue disorder seems the most connected to rheumatology (as opposed to conditions such as diabetes or thyroid disease). I found this article which refers to three different types of scleredema: https://www.ncbi.nlm.nih.gov/books/NBK545159. Has your doctor mentioned types? I wish I could offer more information, but I need to note that we are not medical professionals. Hopefully others will chime in with their experiences if applicable. I hope so, as I'm always interested in learning more about conditions that may impact our community members. Best, Richard (RheumatoidArthritis.net Team) Yes! This is exactly (along with other NIH pages and a MedScape page) what describes my symptoms. My current dermatologist (4th opinion, the previous 3 opted to defer to this dermatologist, since they’d reached their wit’s end) suggested SclerEdema without mentioning types. He ordered my UVB treatment, had me on 500mg Penicillin for a couple of months, and now he has me on Prednisone for a few weeks 3/day 7days; 2/day 7days; 1/day 7days. I can feel the extra material, believed to be exuberant deposition of mucin, profusely secreting all throughout my interstices of subdermal tissues, which had been happening for more than 5 years, while there are virtually no indications about my epidermis, except for the occasional randomly spaced small papules.
In reference to the Etiology information regarding Types and similarities of “Other diseases” on this page, I have yet to meet a physician with such knowledge.
In reference to the Epidemiology, Pathophysiology, Histopathology, History and Physical subtitles of this page, these represent nearly 100% of my experiences.
Through the webpage “MediFind”, I found only one Rheumatologist who is listed as having experiences in treating patients with SclerEdema in my home state of Miami, Florida, and I’m waiting 4 months to see her. In the meantime, I’m trying to lessen my symptom pain levels by use of antihistamine, sleep and be seldomly present in areas less than 200 square feet, as the wider the area, the less flareups I endure.
Yes. The antihistamine act as a numbing agent and takes some pain level off the edge; I'm at about 150mg of Benadryl daily and I am on a waiting list for any earlier appointments made available by cancellation. At this moment, the hugging pressure from the increasing mucin deposition has gotten more intense - imagine how I'll be if a thunderstorm comes through. So I'm seeking consultation with my medical insurance representatives to be advised on the procedure to get myself admitted to a hospital; I have hard copies of my medical summary notes and medical journals on Scleredema & Mucinosis to aide physicians' analysis. Hi
. It seems like you are taking all of the steps you can to get care and to be prepared if you need to do something in a hurry. Let's hope it doesn't come to that, but best to be ready. Having the specific information on the conditions is a great idea, since there is a pretty good chance that a hospital GP won't be terribly familiar. Really hoping you can get an earlier appointment. Best, Richard (RheumatoidArthritis.net Team)
Suffering from excessive mucin deposition throughout my dermis and subcutaneous tissues (in-between epidermis and muscle tissues), and this may possibly involve some internal organs. By now for sure, this phenomenon is wrapped around my entire head and neck (hugging/choking). I'm scheduled to see a Rheumatologist, but waiting for another six weeks.
I'm learning that [excessive] subdermal mucin deposition is a process of overactive immune system protection, as it's providing inflammation in the body when it believes the body is in danger at the cellular level. Does anyone here have this problem; have any knowledge of medication that can safely/temporarily suppress overacting immunity system?
