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Anyone still on here?

dave75 Message
23 Oct 2015, 09:19 AM

Hello everyone. I just joined the board and was wondering if this site's still active. If anyone who posted earlier has updates on their treatments, that would be great. I've had this for about 30 years and have mostly taken a break in trying to treat it. I've been on either Soriatane or Accutane for years (switched back and forth for insurance reasons a few times) and that definitely helps keep the symptoms at bay. But the side effect list of course scares anyone who looks at it. Lol. Mainly I just work at keeping secondary infections at bay with antibiotics and either extremely diluted bleach baths or vinegar baths. I am thinking of trying large doses of vitamins. That seems to help other people...let me know what you think! :)
beetle Message
25 Oct 2015, 01:50 AM

I don't think this forum is very active. Rareshare alerted my email account that there was activity today because of your posting. I have never seen that before, if I have, it has been so long ago that I have forgotten. So that is why I'm here (the email alert.). This may be my first posting, so I hope it may be helpful to you. First, large doses of vitamins can be harmful. Some types dramatically more so than others. Too much vitamin A can cause some of the symptoms you are trying to get rid of. Causality has not been established, but at least one study has shown that people who take multivitamins have shorter lifespans than those who do not. Second, if your physician recommended bathing in diluted bleach or vinegar and that works for you, then stay the course. However, there is growing evidence and an increase in research that too much hygiene may be a bad thing for your immune system and can be a contributor to eczema. Getting the right kind of dirty may very well be beneficial. Just like the situation with vitamins, life is all about balances. Third, I have a coworker who does not have Darier's, but was having trouble with something not healing up. His doctor recommended that he get checked for sleep apnea. He was diagnosed and prescribed a CPAP machine. He was not getting enough rest for his body to heal. I followed in his footsteps and now that I am on a CPAP, I have far less flair-ups from Darier's. Hope that helps.
tbeahlen Message
25 Oct 2015, 02:25 PM

First I am sorry you have this disease and I have to agree with beetle on the large vitamin dosage thing. They can be harmful to you. Large doses of vitamin A can cause liver cancer. With that said, "I have linear Darier's disease that I have been treating pretty effectively with out Accutane or Soriatane. Although I was once on Accutane. So my understanding is Linear Darier's disease is that it is the same as Darier's disease it is just for what ever reason contained to the left side of my back and abdomen. So my treatment is done with vitamins and I stumbled upon it. Every doctor I talk to says it should not work but it does. I want to share it but I also want to hear if it works for anyone else. I would be so happy if it did work for others. At 35 years old, my condition was spread to the entirety of the left side of my back and abdomen. I quit working out and did everything I could to cool myself down and it did not work and the condition kept spreading. I did get diagnosed by a dermatologist and I did use Accutane. It was not fun. As you may or may not know Darier's disease is caused by the inability of the skin cells to absorb or process calcium. I started taking calcium. Calcuim Carbonate (Citrate is not so effective) 600 mg three times a day at first and now two times a day. These pills can be bought at any store like Walmart and they are like $10 for 250 pills. For me the Calcium pills have sent the condition into regression although there are two origination spots that will never completely heal. The other vitamin I added much later and it has a minor effect is Turmeric Curcumin. This also can be bought at Walmart. It reduces inflammation in those origination spots. First understand that when taking the calcium your healing if it is anything like mine is going to be very slow. It took over a year for the condition to clear from the infected parts of my skin. You may have increased speed of healing if you take both the Calcium and the Turmeric Curcumin at the same time. I did not know about Turmeric Curcumin till three years later. The first sign it is working will be that the itching and the feeling like your skin is crawling or the condition is spreading will disappear. After that your skin will not be as bright of a red and will appear a darker red if you will. If this works and I so hope it does, your body will begin healing itself and you can ditch the Accutane or Soriatane. Please keep me informed I would love to hear about your progress.
dave75 Message
26 Oct 2015, 07:06 PM

Thanks for your replies. I did find a pretty active facebook group called "Darier's - Let's know each other" Here's a link: I wasn't planning on taking mega doses of vitamins, just reasonable amounts. That was interesting info about the CPAP and calcium you're on. I'll look into it. Also for some people it sounds like pine bark extract has been good, so I'll be checking into that some more. Good luck on your treatments!