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new treatments

Charlene Message
20 Dec 2008, 06:15 PM

I just joined and I see they don't have an expert on Darier's. Well , I guess I might be. I've had the disease for 53 years and have tried everything possible to cure it or put it in remission. Some things have worked; others have not. Everyone's Darier's seems to be different so doctors cannot just prescribe one overall "cure". I've had about 40 dermatologists, geneticists, plastic surgeons... The laser resurfacing did NOT work. Painful, expensive and I lost my eyebrows and they never returned. The little fish that eat dead skin. Didn't work and basically it was the chemicals in the water that had a soothing effect. Methotrexate-too many side effects. Acetretin-too many side effects and skin did not heal. I could go on for days with the experiments,accupuncture and herbal therapy. Hormones didn't help-hormone suppressants didn't help. So right now just a good coating of liquid Noxzema and a multiple vitamin pill. There have been some clinical studies using Paxil;but the side effects are numerous and the window of healing for Darier's is too narrow to risk the side effects.
ConcernedMom Message
12 Jan 2009, 08:02 PM

53 years of battling!! You are a true soldier of Darier's. My daughter is 21 and her battling is just beginning. She did try paxil and was on it for a year. The side effects were not worth the very minimal improvement. She is currently using Tea tree oil on the lesions and taking supplements that do seem to help. Do you stuggle with the branch offs of Darier's like Shingles, low immune system, etc.? The liquid Noxema sounds interesting. What does this do? Help with itching? Dry up lesions? I hope this blog area will open up avenues of support for those who need it.
BrendaANS Message
13 Dec 2010, 04:49 AM

My daughter has Darier’s Disease (DD). We have known about it, I believe, for about 14 years. We had tried different medications—prescriptions and over the counter (otc). By most standards, her DD would be considered pretty mild. Many of the ideas that I gathered in working with her came from several websites. I honestly feel that most dermatologists do not understand this disease. We found that certain foods triggered DD breakouts and itching. For her, it was tomato based foods and citric based (orange, lemon, lime, grapefruit, tangerine) foods. We doctor her with something like Sea Breeze or Clear Pore by Neutrogena and Gold Bond Medicated lotion twice a day. Since we live in Texas our summers get very hot. We try to keep her from sweating too much. We try not to dress her to where she gets too hot. We do keep her warm enough when the weather and room temperature requires it. We also found out that she had a Vitamin D deficiency. We learned this from taking a vacation to where she was in the sun a lot but did not experience humid weather. She did not break out any. After she returned, the doctor evaluated this deficiency. This might be something for other DD sufferers to look into. She also takes about 4-5 Flax seed oil capsules per day (1-2 after each meal). This cuts down on the itching a lot. We believe that the omega oils help. Also, when she does start itching, an antihistamine helps. Since she is sensitive to Benadryl, we give her Alavert (non-drowsy formula). Hope that some of these homeopathic measures helps others
mdo00 Message
14 Dec 2010, 05:07 AM

Glad to know I'm not alone! I'm 21 years old and was only diagnosed with Darier's Disease under a year ago. My first outbreak was around 14 and it didn't come back until I was 16 and on and off since then. At times it has been extremely bad, but more recently it's been okay. I only get it on the left side of my upper chest and almost neck. I've been on a steroid cream and another lotion. It seems to help somewhat. I've notices that when I wash the area with "hibicleanse" (surgical hand soap from walgreens) it helps to cut back on secondary bacterial infection. I also put myself on cephalexin. This seems to help. My next consideration is Accutane. My dermatologist doesn't really have any other tips on what I should do. I had a little outbreak this past spring break and I went to Cancun and I laid out in the sun and I feel like it actually helped to dry it out. Like everyone else, I can't seem to pin point when or why it comes.
BrendaANS Message
18 Dec 2010, 06:27 AM

mdo00 please make an appointment with your primary care doctor to check your vitamin D level. My daughter did the same thing as you. We went to Hawaii and noticed that being in the sun helped her. My husband took her to the doctor. They found that her body was low on vitamin D. You may also have the same problem. Since she has been on prescription level vitamin D, it has helped her a lot. We had also seen a commercial on light therapy (infrared). I had gotten one of those lights for a pain I had. We used the light therapy on her. This has helped some also. Please see the message above yours for some other things to try. Accutane has not helped most in the long run.
mdo00 Message
20 Dec 2010, 06:38 AM

BrendANS, I will look into that for sure. I read your post and actually went out and got the gold bond medicated lotion. So far it has helped a lot! Thank you so much for sharing that! I've decided to not go on the Accutane as of now. I just can't get past the side effects. I asked my derm about microdermabrasion and he suggested not to, but I've read where it has helped people. My skin looks great right now and I've gotten in a routine of washing my affected skin with hebiclens and I've been using the gold bond every day. My next step will be to check my vitamin D levels. I appreciate everyone's tips and advise! This is such a frustrating disease!
Souleiman Message
8 Jan 2011, 04:48 AM

hi to all. i am 35 years old and i have had DD since i was 9 years old. i was bor and raised in the United Kingdom but my origin is North Cyprus, my mum has DD aswell and she has been battling with it since she was a little child too and she is almost 60 now therfore I consider myself an expert on DD. i have tried all the medication and all the treatments there is. to me and my mum and finally i have found the treatment that actually works. i have the worst case of DD in london uk and most dermatologist doctors that i have seen have told me that its the worst they have seen in the world. the whole of my back and the whole of my front is covered starting from the groin all the way up to the top part of the back of my ears, and its the bad flakey and smelly version all over, some around my scalp and very bad behind my kneecaps, my hand and feet and most of my leg is ok and my face is clear too just a little around the forehead but my neck is completely covered. i am using every day 3 times a day tablets called ACICLOVIR + METRONIDAZOLE + FLUCOXACILLIN ANTIBIOTICS + TRAMADOLL PAIN KILLERS Also i use an ointment called 50/50 liquid parafin and i mix into it 100g of BACTROBAN. this system has helped me not commit suicide for the last 5 years of my life. but now i have seen a doctor all by chance when i attended a medical seminar and the doctor offered to treat me on a new kind of laser treatment. the doctors name is DR NEIL P J WALKER at oxford hospital england dont get confused with the old lazer treatment i tried that its painfull and it doesnt work. This new laser treatment is done under local anistetic so you dont feel a thing. when you wake up it is a little uncomfortable for a few days but the outcome is %100excellent. my back is almost complete and its clear and perfect skin just a little light in colour no marks and no DD its the most happiest days of my life for the first time since i was 9. the treatment is still going as he can only do a maximum of roughly 4 inch by 6 inch area at a time and a 6 week rest inbetween each treatment. as i said before my back is almost complete and last week for the first time my wife gave me a back massage which felt great.i still use the above mentioned pills and medication due to having still the rest of my body but we hope by the end of the new year the treatment will finish and i can stop all medication. also its been almost 3 years since we done the test patch on my stomach and ther is no sighn of DD on the test patch so therfore this treatment is working so far. I know how difficult this disease is so i have decide to join all the DD forums and tell all the sufferes about this treatment so that if they can get it it does change there life. it certanly changed mine. i will be checking up on this site from time to time so if anyone has any questions please ask and i will answer thank you
esseult Message
9 Jan 2011, 01:43 PM

Thanks Souleiman for posting about this new treatment. I recently asked my dermatologist about it and she did not recommend it as of yet since the results are not conclusive. But I think if no one with this disease tries these new treatments, how are we ever going to know what works and what doesn't (keeping in mind of course that a treament for one person does not necesarily work for someone else). I currently live in France but I'll be moving to the UK this week actually. I am tempted to contact this doctor of yours. However, I will not be staying in the UK long enough to follow the full treatment, so I would like to talk to him and see what he knows about this treatment in France. Does he take on new patients? md00, you are right about not trying out the accutane. there are too many side effects, and everything I've read says that the results don't last. I know in my case that being in the sun makes my condition much much worse, even if I don't get a sunburn. That doesn't mean I don't go out in the sun, but I wear a really high SPF cream and limit my time in the sun, no real sunbathing. I had found a cream that was more or less working for me, but it has been discontinued which is really upsetting. I've able to find small stashes at a couple pharmacies and buy it all, but it's not going to last all that long. I've tried the Gold Bond medicated lotion, which doesn't do much for me. However, the CVS brand of medicated body powder helps to dry things up. Funny thing is, the Gold Bond version does nothing for me! I also use a very gentle body oil "soap" and now an ayuvedic soap that seems to be ok for my skin. Has anyone tried accupuncture? Thank you to everyone for your poste. The more we talk about this the more information gets around and we can help contribute to a treatment.
mdo00 Message
9 Jan 2011, 05:05 PM

Yes, thanks for sharing the new treatment info! I had read about it online and my derm also advised me not to do it. I did go and get bloodwork done at the doctor and had different things checked. Turns out my Vitamin D is low and they gave me a prescription for it. I've also been reading that taking Vitamin C daily helps too and that Darier's can be affected by immune issues as well. I recently lost my spleen and that's when my Darier's started showing back up. I posted this before, but really try out the "Hibiclense" wash. You may need to ask the pharmacist about it at the drug store to find it. It keeps the area extremely sterile which cuts back on secondary bacterial infections. I found out that my problem was that I would scratch in my sleep and I was causing more problems. Esseult, I haven't tried acupuncture, but I worked with a doctor who used it often and I think it may be work a try? I haven't really read anything about that treatment, but it may be helpful.
esseult Message
9 Jan 2011, 06:11 PM

mdo00, I would try the hibicleanse but I guess I'll have to find an equivalent here in France. I notice that my skin is worse too when I am sick or when I'm having my period. One strange thing that happened to me 2 years ago was that I had Mono and during the time I was ill my skin never looked so good!!!! However, afterwards I had a crisis and since that time I have to battle with DD everyday. Before then I always had a patch usually on my stomach, and a number of outbreaks during the year, but not anything ongoing on a daily basis. So, I'm not sure what happened but my skin has changed for the worse since the Mono. I also scratch A LOT during my sleep. My boyfriend often has to wake me up to get me to stop! But I recently got a prescription for an antihistamine which completely knocks me out, but I only really need it at night, unless I am having a bad outbreak. Has anyone else noticed that certain foods affect DD like BrandANS mentioned?
Souleiman Message
10 Jan 2011, 05:12 AM

Hi esseult Just to let you know im not the only patient he is treating. he has a few and he showed me pictures of other patients skins before he started my treatment and they have all shown a massive amount of recovery. i understand that many treatments work for some and not other but this is a type of treatment that works the same to all DD suferers. when i first found out about this treatment and i went to see my dermatologist he to had told me to stay away from this because its too soon and theres no proof that it will work, the same thing was told to me by my GP who is also practicing dermatology. All i can say is that im very glad that i ignored them both. good luck in ur move to uk if you have any problems contacting the doctor you can call me i would be glad to help. my mobile number is 07939698716
esseult Message
10 Jan 2011, 04:20 PM

Souleiman, thank you for your message. I'll definitely contact this doctor once I am settled. Maybe you can answer a question. In the UK does your GP have to write out a letter for you to see a specialist? That's how it works in France. Please keep posting your results with the treatment, it's so important for all of us! And I'll contact you if I do have any problems getting in touch with the doctor. Thank you for your help :)
Souleiman Message
10 Jan 2011, 08:07 PM

esseult yes u have to see ur GP and they have to write a letter just like you said. but if you have an outbreak or if your DD is getting weepy then you can go to the hospital A&E and they can admit you and start treatment straight away and you can get specialist to see you via hospital recomendation without GP letter. its a short cut to the specialist.
mario111111 Message
10 Dec 2011, 04:34 PM

Hello Everyone, Can you please join the Facebook page for Darier Disease.. The page is called : Darier's disease, let's know each other!!! and please Souleiman can you share your experience on facebook... Thanks a lot!!!
tbeahlen Message
1 Oct 2012, 05:56 PM

Hi, I was 17 when two patches of what I now know as Darier's disease surfaced. One on lower left back and the other just under my chest bone. Besides a few flare ups here and there the condition remained under control until I was 35. Then it just went crazy. I had patches of skin on my lower left abdomen as large as my palm and same on my back that were bumpy and densely populated with the red bumps. It hurt, it itched and I could not stay cool enough even in a Wisconsin winter to stop this from spreading. It was at this time I was diagnosed with Linear Darier's Disease. I also started taking over the counter calcium\vitamin D supplements 3 times a day. With in one month it was clear to me that this was working. No longer did my skin feel like it was crawling and some of infected areas seemed to appear as if they were shrinking. It took over a year for 99% of the rash to disappear but the rash is gone and only comes back when I neglect to take enough calcium\vitamin D supplements (two a day). The hardest\longest areas to heal were those where I had a layer of fat under the skin. I buy these supplements at Walmart. They come in a green bottle with a yellow label. I think they are called Nature Valley but I can't be sure. I also can not be sure that these results will work for everyone but I would love to hear if the supplements do or don't work for anyone else. I know everything I read about Darier's Disease say that taking additional calcium supplements won't work because the problem has to do with the calcium pumps in the skin cells being damaged. I am 37 now, I have very minor signs of condition, I get an occasional bump on my abdomen (One every two or three inches). Also I do have discoloration under the skin where the condition flared up during my outbreaks but the condition has been contained with no side effects. I pray this works for all of you or even it is just some one else. P.S. I am not a doctor I am just documenting my experience. It is my hope your experience is the same as my own. You should consult a doctor before taking the supplements. I did not experience any side effects to date but I can not be held accountable for any side effects that may occur by taking these supplements. If you do decide to follow my advice you do so of your own accord and risk. Also remember the healing process is slow so don't be disappointed at first if it doesn't seem like it is working.
JoseManuel2 Message
13 Oct 2012, 02:43 PM

Dear Souleiman. I apologize for my English. I'm from Chile and I was diagnosed five months ago Darier's disease, the medication I use to treat it is isotretinoína, but only serves to contain it, let me know how your treatment has evolved until today and whether improvements are permanent over time....