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Here are all the 2126 Messages (most recent at the top, 20 per page)margaret () from , left at 10:25:21- September 27, 2008
HI EVRYBODY WITH DD TRY THIS IN STEAD OF SOAP BUT DONT USE IT EVERY DAY U CAN PUT IT IN THE BATH IT CLEANS THE SKIN WITH OUT RUBBING THE SKIN TO MUCH U CAN GET A TUB OF THIS FROM BOOTS IT IS EMULSITYING OINTMENT BP.
Sharon () from USA, left at 22:7:35- September 25, 2008
Amy: Something that is somewhat natural that you may be able to try while pregnant is a teaspoon full of Turmeric each day. I have had DD for more than 30 years and normally do not require any medication; recently during a flair someone suggested that I try Turmeric and it helped clear me up without having to go on antibiotics. Hope this helps. Also the Epsom salt soaks do help and if you have the opportunity to go swim in the ocean it does wonders.
Frankie (email@example.com) from USA, left at 22:1:49- September 24, 2008
John, thanks for ur answer. Im not sure if my skin is infected right now or not. its broke out pretty good on my neck and then the bends in my arm and a lil on my chest but thats it. The wierd thing is though is that she is broke out in places that doesnt even come in contact with the dariers such as her back, and her legs. I dont know what's wrong. Im just worried about this. She said it doesn't bother her but it bothers me and i dont want this to because so much of an issue that she could possibly leave me for it.
John (firstname.lastname@example.org) from USA, left at 13:6:27- September 24, 2008
Hi Frankie. For me 20 m.g.'s of soriatane would do nothing. I take 50 m.g.'s a day and it works great. My skin got so badly infected this last outbreak that my daughter got some rash on her arm from hugging me. When they finally cultured my skin it came back as staph so you might want to be careful that you are not giving your girlfriend some kind of infection. The darier's is not contagious according to doctor's but the infections we get are. Valtrex and doxycycline are what finally got rid of my infection and the soriatane cleared up the darier's. God bless, John
Frankie (email@example.com) from USA, left at 23:39:4- September 22, 2008
Hi, im on 20mg of soriatane daily and it seems as if its not doing ANYTHING for my dariers disease. On top of the soriatane i use retna a micro 0.04% topical creme and cetaphil as a moisturizer. Recently i got a new gf and for some reason ever since she has got with me and we have close, sexual encounters her skin breaks out. Has anyone has this happen to them before with DD? I know that they say dd is not contagious but im not sure what could b causing this. could somoene help me out? This is VERY stressful and im worried that she could possibly leave me because of it. She says it doesn't bother her at all but im just worried about it. I REALLY like this girl and i would like to know what could b causing this.
Aaron (firstname.lastname@example.org) from US, left at 19:3:54- September 22, 2008
Hi Kaitlin, I'm 31 and my Darier's is mostly clear but I've been taking an immunosuppressant off and on since last year. Save for skin infections the scaly skin has not returned for the time-being. I've found vitamin A worked well in the past, as did topical retinoids, but nothing gave me lasting relief. I take Epsom salt baths once a week and I take lysine and biotin. Lysine has proven to be ineffective but the biotin on the other hand has strengthened my hair and nails albeit slowly and not restoring my receding hairline. if you have a lot of scaly skin you can try retinol, an over-the-counter, vitamin A cream, or Witch Vera, made from witch hazel and aloe Vera. To answer your other question I find Darier's hasn't progressed into something worse and I can definitely can say it has improved since 1990 when I first had a flare-up. Good luck and I hope you find a dermatologist w/ more knowledge of our condition.
John (email@example.com) from USA, left at 5:45:59- September 22, 2008
Hi Kaitlin. I have been battling Darier's since I was 15 and I am now 45. I have been to about 15 different dermatologists in my life and 3 skin biopsies all came back as darier's. Some of us have mild cases and some of us have severe cases. I have realized one thing in life as I get older. God never gives us more then we can handle. I think he pushes it sometimes but he let's us go through things to help us grow. I have seen mine get worse as I grow older but I have also seen my better then I ever have seen it in my whole life in the last 2 weeks. Soriatane, doxycycline antibiotic and valtrex have worked wonders for me. I am off the valtrex and still on the soriatane and doxycycline. The doxycycline is for another 15 days and the soriatane is for good or until a cure comes up but from what I see Paul in the bible had a thorn in his side and I believe this is my thorn in my side to keep me close to God so I don't mind because lots of people in this world have 10 times worse battles then darier's. Don't stress to bad and try to understand God is in charge and lean on him. Sorry for the preaching but for years I drank like a fish and did many drugs until I realized it was him I needed. There is lots of help you can get from this site but don't get overwhelmed. Take care and God bless, John
Kaitlin () from , left at 22:48:18- September 21, 2008
Hello everyone, i am twenty years old and have finally been diagnosed with DD after 10 years of doctors that didn't have a clue. I have linear DD. my question to you all is does it get worse with time there hasn't been very much change in the last 10 years but as i read through some of your messages my hopes for this being treatable are disappearing. as of right now my nails are not affected at all and my DD is fairly calm compared to pictures i have been looking at. Please if you can fill me in on any of my questions this is a little over whelming and my doctor does not know much of the disease.
Aaron (firstname.lastname@example.org) from US, left at 15:34:52- September 17, 2008
Hi everyone, Well I'm on my 5th week on Methotrexate this go-round. I also went back on Haldol for my psychosis and Cogentin for the side effects. I'll be going on Depakote as a mood stabilizer in a couple of weeks most likely. So far I'm not seeing any improvement in my nails but I'm taking 5 mg of biotin a day in addition to the Methotrexate. I quit drinking coffee including decaf a while back and the IBS has calmed down considerably. The only beverage w/ caffeine I drink is tea. I put myself on a high protein low-carbs diet as well. Weight gain has become an issue w/ the psych meds because unfortunately I have a ravenous appetite even after 3 meals a day. Going into the fall my skin will calm down and I'm hoping that will connect into the mental faculties. I'm on 15 mg of Methotrexate a week but it'll be dropped down to 7.5 mg once I see some clearance in the DD. Anyway, that's my treatment plan for now.
Frankie (email@example.com) from USA, left at 14:6:1- September 17, 2008
amy,im not 100% sure if its good for pregnancy but u can ask ur doctor if Retna A Micro 0.04% is something that u can use. For MANY MANY years my doctor down in texas had been trying to get me off of accutane. I moved up here to michigan and my doctor put me on that retna-a micro 0.04% it had to b that percentage. nothing else would work. on top of that i used pandel for the face when i had mild flare ups and topicort creme on my lower part of my body for flare ups. It worked good for many years and then it just stopped workin and they had to put me back on soriatane this time. I thought this might help u though since for the time being u cant take accutane. well, let me know how things go. if u want to email me or talk to me on msn or yahoo or aim my sn is hoova53 and my email is firstname.lastname@example.org....as for any other dariers disease sufferers if u want to chat feel free to msg me i would love to talk to someone with dariers and maybe try diffrent things
Amy () from North Carolina, USA, left at 12:41:58- September 16, 2008
Hello to all. I hope you are all doing ok. I have had DD for years and was on accutane, but now I am pregnant. does anyone have any suggestions of things I can try that would be safe during pregnancy?
Louise () from USA, left at 2:26:1- September 12, 2008
Hello to everyone! It has been awhile since I have been on. I wanted to let you know the Dermatologist I see. It might help anyone that lives in this area. Gwinnett County GA. Her name is Dr. Cynthia Dolan and she is a part of the North Georgia Dermatology Group. The tel# is 770-962-5040. It is in Lawrenceville, Ga. 30045 . She knows alot about DD and has helped me so much. I hope this will help someone who might be looking for a good dermatologist. Have a great day
Corey (email@example.com) from USA, left at 5:53:12- September 9, 2008
Hello, I have DD. Diagnosed when I was 7 and Im 34 now. Religiously seeing a Dermatologist for about a year now. I was taking amnesteem. It worked!! I had to have blood tests and its regulated by the governmet. Very powerful. Thing is, Ive moved and am trying to find another DR. I constantly have secondary infection too. Just found out today I have infection in my eyes due to DD. So, I havent found any home remedies to help. We are seriously considering moving to a colder climate. I would love to talk more about DD if you want to email me. I have to say...My old DR. took pics of me when I was admitted in February because it was the worst case he had ever seen. Love to compare stories.
John (firstname.lastname@example.org) from France, left at 15:24:41- September 8, 2008
To Miek from Holland and all my fellow Darier's sufferers:
From the age of puberty I really began suffering a lot with skin problems. Of course they thought it was psoriasis or eczema and treated it as such. I even recognize many of the "treatments" you continue to use and share with others as the same ones I used in the 1960's. Progress, progress! Finally, I was diagnosed with Darier's at the Cancer Clinic in Philadaphia in the early 1970's. I was around 21. At the time the only thing that worked for Darier's was Vitamin A Acid, it wasn't cheap and believe me it burnt. Until that "miracle" drug I was doing like most of you, even borrowing my sister's sanitary napkins to soak up the pus oozing in my crotch. The smell was atrocious. On top of that, I was told to use "coal tar" soap which smelled even worse. Going to school when I had an attack was a nightmare. I learned very early that it would eventually go away, but in the meantime I had to learn to live with it. From my Catholic education I began to think of it as "My cross to bear." I had been a junior high French teacher for three years and no longer desired to stand up in front of 30 teenagers once or twice a year with crusty red blotches behind my ears, on my forehead, around my nose and hear the inevitable question from students and coworkers "Is it contagious?". I decided to go to Europe and maybe "start a new life". My first stop was Paris. I found a job teaching English to adults and when I had my first attack of Darier's, I went into work as usual. My boss saw me and immediately told me that I needed to see a doctor and sent me directly to a Social Security medical center near the school. He even called the center to make the apointment! I told the doctor what I had and as he had never treated anyone with Darier's, he referred me to a specialist at the hospital specializing in tropical and skin diseases. They did their own biopsy and came to the same conclusion as the Amerian doctors. I was immediately put on Tigason (the precursor of Soriatane) and have been on it since then. I have blood tests every 3 months to check my Cholesterol and Tranaminases. I have been living a normal life since then. I don't know the medical insurance system in Holland, but I'm sure you can ask your doctor about Soriatane and if he speaks French, I will put him in touch with my dermatologist here in Paris. My family doctor is Dutch and knows about Soriatane, so you might be able to speak to him. I'm really sorry for all of you having to continue using "old-wives" remedies because of the insurance system in the US and the price of Soriatane. This is what universal health care could take care of. I am 1 person out of 55000 suffering from Darier's here in France (around 1100 cases) and thanks to the medical care system, my years of dermatologists, tests and medication have cost me nothing other than my contribution to the fund. Lots of Americans may be "down" on the French for one reason or another, but I'm here to tell you this American Darier's sufferer owes his normal life to the French. God bless them!! John
John (email@example.com) from USA, left at 3:21:55- September 6, 2008
Hi Frankie. I decided that not knowing why jello works, just knowing it does because my nails look good, was not good enough for me so I googled Jello and it says that gelatin in Jello is high in protein and is good for your nails and hair. I can't say I have noticed any difference in my hair but I definitely know my nails are better now then they have been in years. I sure hope that helps you. God bless, John
Miek () from Holland, left at 11:31:57- September 4, 2008
Greetings from Holland. Who can help? Who knows an expert in DD?
I have DD and this month my EYES began to hurt more and more and my sight is getting worse. Yesterday in the hospital they saw punctata (litlle holes)in both eyes (in the cornea?)that cause the pain. They have never seen so many and such big holes and didn't understand that my eyepressure is normal by that complaint. So i told them i have been reading on the internet that DD can cause serious eyeproblems, they assume now it is caused by DD, but know nothing about it! Now i got eyegel (Vidisic carbogel), it can probably help. Who knows more about it?
DD-history: three years ago a new, young dermatologist finally recogized that my 15 years of skintroubles are due to DD. Whith Calmurid, Hibiscrub and staying out of the sun it goes mostly rather well.
John (firstname.lastname@example.org) from USA, left at 3:32:5- September 4, 2008
Hi Frankie. I am not sure what it is that jello has in it but all I know is my nails were really thin and broke all the time and they got black marks under them that caused infection and since I started eating Jello like my sister advised my nails have gotten stronger and the black marks are gone. My sister has lupus and she tries all kinds of nutritionist things before she will take medicine and some of them work and some things don't but it's worth a try and it worked for me. Take care, John
Frankie (email@example.com) from USA, left at 21:28:5- September 3, 2008
John, Jello? what does this do to ur nails?
John (firstname.lastname@example.org) from USA, left at 14:57:41- September 2, 2008
Hi Frankie. I can't give a suggestion about what alcohol to drink that is better for 2 reasons. One I know for me for years I covered up how I felt about myself with alcohol and now I don't do that so I wouldn't know what kind of alcohol would be best. Two you are on soriatane and it says not to drink alcohol but if you must please be careful of your liver. As far as your nails. I have lost about 20 nails in my life due to the Darier's and right now my nails look great because of the fact I listened to my sister and tried to eat jello everyday and for the last month I have eaten 2-3 bowls of jello every day and my nails look great. God bless, John
Frankie (email@example.com) from USA, left at 7:7:8- September 2, 2008
also, i have another question not until this year have i have problems with my nails. my thumb nails look HORRIBLE and it looks as it my cuticle is growing too much or something. not sure but it pushes up on my nail. can anyone in here recommend anything for my nails. I was off of soriatane for about 5 years and was recently put back on it. she started with 10mg a day for 3 months and then this last month it has been 20 a day. if someone could give me a recommendation of what i could do it would b GREATLY appreciated. Thanks
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