Discussions By Condition: Medical Stories

duhring sneddon wilkinson desease

Posted In: Medical Stories 6 Replies
  • Posted By: weather22
  • October 16, 2007
  • 05:23 PM

in 1990 I was diagnosed with subcorneal pustular dermatitis. , I have not felt good since , I am constantly in somesort of pain. because this is a rare desease and not much is known, I am looking for others who has had this disorder. I would like to know if anyone has had other symptom or if other symtoms arise from the condition , I have no sores at this time. I take dapsone at the first sign of a blister ,stomache pain usaually accompany.I now have symtoms of MS , no lesions but I am nearing disabilty and I am Desperatley Looking for answers. ANY HELP!!!!!

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  • in 1990 I was diagnosed with subcorneal pustular dermatitis. , I have not felt good since , I am constantly in somesort of pain. because this is a rare desease and not much is known, I am looking for others who has had this disorder. I would like to know if anyone has had other symptom or if other symtoms arise from the condition , I have no sores at this time. I take dapsone at the first sign of a blister ,stomache pain usaually accompany.I now have symtoms of MS , no lesions but I am nearing disabilty and I am Desperatley Looking for answers. ANY HELP!!!!! im so excited 2 find someone else with this(sucks i know)but a relief 4 sum 1 2 actually understand. I was just diagnosed last month ive had n ndealt with it 4 11 years now just wrongly diagnosed cleveland clinic helped alot. I am now disabled i aldso got the pyoderma gangrenosum the bad artritis and diverticulitis(had part of my colen removed)all caused from this sneedons.this last year has been my worse it seems like i dont even get a whole week of no blisters. I also am on dapsone i have taken 200mg everyday 4 about 6 years now n CONSTANTLY on steroids which i hate the most.This last month they have me also on cyclosporine it seems 2 b helpin the pyoderma not so much the pustulars. Im only 32 n just want 2 know if it is this bad already what is it gonna b like in 10 years. I wish there was more info. Neway i would love 2 compare stories please contact meshannadiller@yahoo.com
    ssdiller77 1 Replies
    • October 30, 2009
    • 09:11 AM
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  • I was diagnosed almost a year ago. By the time I was diagnosed I had the pustuals from head to toe even in my hair. I had been to my family doctor who put me on prednisone and had even went to the emergency room (to no avail). The high levels of prednisone did its own evil. My legs swelled to the point where the skin was coming off and my own plasma was leaking out. Totally disgusting. I eventually got hooked up with a dermatologist at University Hospital who put me on Dapsone. That helped but not only did I suddenly (at 40) get this rare skin disease I also had to be one of the rare people to be allergic to Dapsone. I got a high fever and really weak this one Sunday, I went to my family Dr on Monday and was in the Hospital that day. The Dapsone had killed all my white blood cells. I was on the oncology ward for over a week on antibiotics like mad and taking shots to rebuild my white blood cells. They said if I had gotten exposed to any germs I could have died. After all this not to mention having to walk around looking like a monster (I had it on my face too) I was fed up. My Dr put me on a different medicine that caused my hair to fall out. I'm the type of person that has to be proven something so I (and I wouldn't recomend this) but I weened myself off the prednisone and then the other medicine I was taking. I haven't had any major breakouts in a few months. In November it will be a year since the whole ordeal started. I did a lot of research on prednisone. It can cause all kinds of bad things in your body. It will cause your muscles to weaken and can even cause injury to the muscles. One of my calf muscles has never been the same and causes me pain everyday even now. I started taking fish oil because my legs and feet were still swelling and that has helped. I also take Echinacea to boost my immune system because as you probably know Sneddon Wilkinsons disease is an immune disease and you are more prone to get sick easily. Like I said I would not recommend anyone to stop taking your medicine, so far this has worked for me. This is such an unknown condition I think Drs do the best they can and obviously people react differently. I am only 41 and have all my life always had lots of energy but I know what you mean about pain and weakness. I have never been so tired and weak as I am now. Taking it day by day, with God's help
    Anonymous 42789 Replies
    • October 19, 2010
    • 02:41 PM
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  • I, too, have been dealing with this rare skin condition for almost a decade. I have tried a variety of drugs and it has been disheartening. Recently, someone suggested that I try a traditional Chinese herbalist doctor to see if natural remedies can help. I have just started and will report back in several months if it is helpful. I personally supspect that the skin condition is tied to hormonal levels so there is a chance that dietary restrictions may alleviate the condition.
    VanGwen 1 Replies
    • September 13, 2013
    • 06:20 PM
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  • Wow!! Three other people with it, I may faint. I was started having symptoms in 2007 and was mis-diagnosed until 2012. I'm also allergic to Dapsone so my Derm tried me on a number of things (on that gave me constant vertigo) until she experimented with a stroke medication that also happens to be a TNF inhibitor. Since then I've only had one awful flare where I was on an ungodly amount of steroids for nearly three months and oddly enough as soon as I was weaned off them the flare went away. I'm happy with my medication and will happily take one flare every three years since this medication has little to no side effects. I'm in my mid 20s so having found something that works with little damage to the rest of my body is wonderful. Does anyone get treated like a case study when seeing a new Doctor?
    AngiD30 1 Replies
    • January 23, 2015
    • 08:15 PM
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  • I can relate to all of you. I was diagnosed in 2014, had been going to the doctor since 2012. I went to my primary care, two dermatologists, urgent care clinic and the emergency room. I had gotten so bad I went to my allergy specialist who referred me to a dermatologist who finally was able to diagnose me. Oh did I mention three different biopsies. Luckily the last biopsy was done properly and she found out what it was. This condition has changed my life completely. It's a daily battle with my skin, not to mention the money I have spent on bath products and lotions. After all that I have recently been diagnosed with osteoarthritis and fibromyalgia. My immune system is shot, I have no resistance. It's like oh lord what is next? I do take acitretin and it has helped with the breakouts although I still have them but not nearly as bad. I am thrilled I found this blog. You feel like it must be the rarest disease around when the doctors go "I've never seen anything like it!"


    Anonymous 1 Replies Flag this Response
  • I have been dealing with this disease for about 6months. I guess I'm at the beginning of my journey. I have taken predisone. I'm on dapsone my doctor has been increasing my dosage of dapsone with every visit but this last she decided against it because I am showing sign's of anemia and now an antibiotic called minocycline. Now im wondering whats next.The beginning I felt like a walking corpse of rotting flesh. I'm not where I was with in the beginning but my flare ups are just as painful n disgusting as in the beginning. Reading the above passages has me anxious but at the same time I feel like I need to know what I'm dealing with. I see for the most part that I will be dealing with this for mostly the rest of my life. Has anyone found any relief in pain besides pain meds beginning that I do have an addictive personality I don't want to depend on them.
    Anonymous 1 Replies
    • August 18, 2015
    • 11:02 PM
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