This site has had a Discussion Board since late 1999. The Discussion Board is the ideal place to share any information you have on the disease, or to ask questions of fellow sufferers. We guarantee we will not pass on your details or E-Mail address to any other party, for any purpose. However, please be aware that some people farm E-Mail addresses from Message Boards and use them to send out Spam E-Mails... There is not a lot we can do about this, but so far we have not had any occurrences of this, so fingers crossed!
Here are all the 2126 Messages (most recent at the top, 20 per page)nee () from , left at 20:5:27- February 19, 2009
David I have been using vicks vapor rub on my nails and taking biotin vitamins this really has helped with mine.
David Diamond () from , left at 3:52:35- February 19, 2009
I have had Dariers Disease all my life, age now 66. I have learned to live with it, but although my skin disease is not as bad as photographs I have seen, I have the embarrassment of brittled finger nails, what treatment can I use for this?
Liz Benham (email@example.com) from US, left at 15:14:0- February 16, 2009
I am pregnant as well, Due March 9th. When are you due? I have not been tested but I believe that I am a new mutation because no one else in my family has this. I hope my baby does not get it. So far my Darier's has not been too bad. Right now I have a flare up on my chest. In the past I have used oatmeal baths, bendryl, lotion with mentol, and destin(diaper rash cream) to help with the itchiness. Good luck with your pregnancy. Liz
Susan (firstname.lastname@example.org) from , left at 16:19:32- February 15, 2009
Arthur, I've had Darier's for about 30 years. In the past few months, I've had the oozing you speak of and it would not go away. One day I bought neosporin and corn starch (found in the bakery isle of the grocery store). In a few days, it really helped and the rash is almost gone. I began to get relief after one day. I can't use regular powder like Gold Bond or Johnson's Baby Powder because of the extra stuff they put in it. But corn starch pretty much dried it up and it only cost 99 cents. Hope this helps you.
Cheryl (email@example.com) from , left at 7:34:4- February 9, 2009
I was diagnosed after a biopsy with dariers disease when I pregnant with my first child (8 years ago). I have a mild case on my torso which flares up at times. I have found that using Salex (salicylic acid topical) and a salt scrub help to keep rash from flaring up. I am starting to think about taking and oral retinoid in hopes of getting rid of the rash. Anyone with positive results? I am concerned if the side effects outweigh the benefits. Thank you for the posts!
kathy wilmot (firstname.lastname@example.org) from england, left at 5:20:41- February 8, 2009
I have had DD since the age of 7, my mother had it and I also have a sister with it.
At present the treatment I am on is tigason, dermol 500, oilatum and chlorphenamine tablets to help the itching.
My sister is very bad and is at the present time having laser treatment which is very painful but once healed is helping it as she has a lot of open areas.
The time of year helps mine as when the summer comes it tends to blister and I tend to get low as doesn't help having to keep covered up.
My sister Janet Williamson was the founder of the dariers support group (dardis).
Stewart (email@example.com) from USA, left at 9:59:47- February 7, 2009
Arthur I use medicated gold bond powder for my groin area. Or the equate brand from walmart. We also use the ultimate gold bond lotion for the entire body.
Paula (firstname.lastname@example.org) from England, left at 14:38:57- February 5, 2009
when I was about 10 years old i started having an itchy scalp. i was terrified of the school (nit) nurse arriving and pointing this out to the the other children. It went on from there. As a teenager i scratched a lot, especially my upper arms and upper back, and scalp. Most of my painful memories are from my mother saying to me " stop scratching, you animal". I still cannot forgive her for that. My sister had some sort of skin disease around the same time, it was not the same thing,she seemed to spend a lot of time at the hospital, or at the doctors, coming home with all sorts of iodine bath treatments and bandages. My teenage years went on, and I would try to hide the itching. i started work at 18 years old. People would say to me " Stop scratching, have you got fleas?" I never wore t-shirts without sleeves, or low tops. I was terrified to have relationships with males. I became a nurse in my mid 20's.I worked in an operating theatre. My skin developed brown patches and I really thought I had caught a dreadful disease. I left the hospital due to an accident, but the skin disease kept on. I met my current partner soon after, later he told me he felt my back and thought i had been burnt in a fire...10 years ago I had a hysterectomy, all seemed normal for a few months. I realise now i was still full of the morphine drug from the operation that kept the skin disease at bay. the brown patches now have gone from my back, and the tops of my arms. I have spent many years at the doctors, who have ridiculed me, or have given me wasteful drugs and creams. 3 months ago i went to my local doctors as i thought i had a flare up of a gall bladder problem. He saw the patches on my upper abdomen and said " I see you have dariers disease" No one has ever said to me what I have wrong with me. i came home, saw the pics of dariers disease, and this is indeed what i have. i am 46 years old, i have suffered with this for 36 years. My doctor told me he knows of 2 sisters locally who have the disease. I may go back and ask if i can meet them. I know he knew what he was talking about from other things he asked me. The disease is affecting my lower face at the moment. I would like to contribute to the discussion group with all the thngs i have found to have helped me over the years. If anyone would like to chat about this, please feel free to email me. Paula
Arthur L. Russell () from usa, left at 7:22:15- February 5, 2009
Does anybody have a problem with excessive oozing in the affected area if so any suggestions on what to do toslow down or stop the oozing mostly in groin area. thank-you I am 65 and have had this disease since becoming a teenager. thought would get better when I got older but getting worse and can't find any thing that helps much anymore.
Aaron (email@example.com) from US, left at 13:58:34- January 31, 2009
Hi Chris, The answer to your question is yes salt water in any form is good for clearing up DD. I take Epsom salt baths once a week. The other name for Epsom salts is Magnesium Sulfate. I found in the summertime that swimming in the ocean made my skin smoother. Swimming at the pool is also good since chlorine disinfects the skin. I took an immunosuppressant called Methotrexate for almost 2 years cumulatively and my skin and nails are much clearer, although not 100% healthy. Vitamin A is supposed to be good but only in the form of beta carotene that's safer for the liver. If your daughter has oily scales using a product called Witch Vera that combines aloe Vera and witch hazel is good to dry the area out and soothe the burning feeling. I take 5 mg of biotin and I don't know if it helps much but my nails and hair grows more rapidly.
christina (firstname.lastname@example.org) from usa, left at 0:28:27- January 31, 2009
hello everyone ive had dariers since i was ten years old but didnt get to bad until 18, i toook accutan off and on for ten years it helped with blisters but not with scales. ive been on soriatane on and off for two years it works wonders but when i stop taking it .my skin flares up bad. i use to get shingles while on acutane but never have had them since starting soriatane. has any one noticed bad side effects on soriatane.
Chris (email@example.com) from USA, left at 19:9:59- January 29, 2009
My daughter has DD. We went on a cruise and her rash cleared up within 7 days. Does anyone know if taking salt baths or swimming in the ocean on a regular basis has been shown to work as a long-term treatment?
John Lancaster () from England, left at 0:8:37- January 26, 2009
I have had the condition since i was 25 and it has gone nuts at the mo my diease i am told is a new mutation as nobody in my family has the condition and i have tried everything
from the tablets Acirentin which i had bad side affects on and dermol cream and not a thing i used has work and it's got a lot worse as i got older i am now 32 and i get it in my hair and under arms and on the neck and groin now let hope they can come up with a cure very soon
Aaron (firstname.lastname@example.org) from US, left at 8:56:52- January 14, 2009
Hi everyone, I'm done w/ my last round of Methotrexate therapy. My skin is mostly clear and my nails have improved significantly. I continue to take biotin and have seen some change. I know anxiety is a trigger for many of us so taking psych meds is working that angle. I have schizoaffective disorder. I'm on Zoloft for depression and obsessive compulsive disorder, Risperdal and Haldol for psychosis, and Cogentin for the side effects. I also have irritable bowel syndrome and acid reflux. I've taken Prilosec for a couple of months and my acid reflux is pretty much gone. Cogentin slows intestinal contractions and muscle spasms Zoloft raises serotonin in the intestines and I also take a synthetic fiber product called Fibercon or calcium carbophil in its generic form. I realize all DD cases appear to be unique but I have mine at a tolerable level. I have some black lines under my nails again and the growth underneath characteristic of DD but that's not so bad in the grand scheme of things.
Scott () from California, USA, left at 19:37:20- January 13, 2009
I was diagnosed with DD at age 20, just a few months after joining the Navy. Since that time, I've tried every standard therapy and combinations of them (Accutane, Retin-A, Tazorac, Fluocinonide-5, and a variety of natural treatments such as epsom salt soaks, goats milk soap, salycylic acid soap, high dose vitamin A, etc. etc.). Nothing made a visible improvement, some made it worse, some made it tolerable.
In 1996, my Navy dermatologist at the Balboa Naval Medical center did a test area the size of a dime on my forehead with a CO2 laser.. and 12 years later, that test spot remains clear.
Today, I finished my first of several treatments at the Naval Medical Center over the next 3 weeks with the Erbium-YAG laser. My Dermatologist from 1996, who was President of the American Society for Laser Medicine & Surgery (ASLMS), and is now on the board of American Society of Dermatologic Surgery, participated in the 1st surgery. I know how fortunate I am, believe it.
I have high expectations for the outcome. The Erbium laser has been used successfully on Darier's lesions many times now.
I realize that it may not work for everyone, maybe not even for me. But the chance to walk around or have meetings for the 1st time in my adult life without the stares and prejudgments associated with such a visible skin disorder makes it more than worth any risk involved to me.
Please ask your dermatologist if this is an option for you. It could be a real life changer.
Case Study of Erbium YAG on DD:
nee () from , left at 11:21:18- January 13, 2009
I am a suffer of DD for 32 years now,and I am wondering if anyone else has been told they have avascular necrosis in their knees because of high doses of prednisone?If so what type of surgery did you have?I am going crazy with this stuff it just seems to be getting worse and there is no better in sight.Please help!!!!!!!!
margaret () from , left at 2:4:31- January 13, 2009
TRY DEAD SEA SALTS IN STEAD OF EPSONS SALTS THEY ARE NOT AS STRONG AND THEY WONT DRY YOUR SKIN GET THEM FROM ANY GOOD HEATH STORE
lisa () from liverpool u.k, left at 7:37:16- January 10, 2009
I am writing this and i am in so mch pain i think this is the worst ive been. I have just finised a course of 500mg of fluoxicillin as my skin got badly in fected all round my shoulders it has spread to my chest and under my breasts and im taking painkillers every 2 hours. The pain is like having thousands of hot little pins stck in me it is getting that bad im thinking of phoning a locum out. Just cant wait to feel a little bit normal again i think i have tryed every cream and tablet going its just something we have to live with just some times are harder than others. I have had dd for 21 years now and if anything is got worse as ive got older not easier so i suppose everyone is different just glad my son doesnt have it he has had a biopsy and it came ck negative what a blessing. Noone else in my family has it and the doctors reckon i could e the starter of it which is a horrile thing to know.Anyway of for a lie down to stop feeling this pain for aa short while. hope your all well lisa x
Susan (email@example.com) from USA, left at 20:37:23- January 6, 2009
I got a free bottle of Vaseline Intensive Rescue Clinical Therapy lotion from F.I.R.S.T. I know we're all different but this has really helped me. My skin is smooth where it was rough ad bumpy. I also take accutane but my skin was still really rough on my legs, arms and back. So, maybe give it a try. It can probably be found at any drug store.
Toni () from USA, left at 12:26:40- January 6, 2009
Cara, I have a daughter named Cara (same spelling too) who is now 20 yrs. There is no history in my family or my husband's family of DD. When she was diagnosed at 8 yrs. we had a genetic test done; hers is a new mutation (at Jefferson Hospital in Philadelphia) in the types of DD that they have tested for and are researching. We were told that sometimes it is simply a genetic mutation & no one knows why it happens. For the itching, try Wounded Warrior (sold on the internet); it really helps my Cara keep her skin moist, stops the itching and redness; it's an all natural product that you can use while you're pregnant. Just google it and you'll find it on the internet.
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