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)John (firstname.lastname@example.org) from USA, left at 1:41:42- August 16, 2008
Hi Jaime. I actually got rushed to the hospital in an ambulance 9 months ago and was in the hospital for 3 days with muscles twitching. Heart rate of 160-200 for 28 hours till medicine finally worked and got my heart rate normal. I think it happened a couple of other times but I thought I was having a panic attack and it went away in a few minutes but this time it just kept going. I am on cartiazem everyday now and they called it atrial fibrillation and it could happen once in your life or it could happen everyday they aren't sure what causes it but just to be safe they put me on heart medication. This world is so fast now that everyone is rushing around so no wonder there are more medical problems now then there were years ago. I guess it keeps doctors and pharmacy's in business. God bless, John
Jaime () from U.S.A, left at 22:17:24- August 14, 2008
Hi everyone. Just a quick question. Has anyone ever had any problems with their nervous system, or with muscle problems. Let me know if you have. I just got out of the hospital because of heart palpatations, trouble breathing, and muscle tremors. All the tests for the heart and lungs came back good. Still waiting on EEG results. Have no idea if this may be related to the DD or not . THat's why I'm asking. It's pretty scary to be going through all this. I'm only 29 years old. Take care everyone and please let me know if you have any answers. Thanks.
John (email@example.com) from USA, left at 23:43:24- August 11, 2008
Well I went to see my dermatologist today and he didn't like what I said but he gave in and wrote me a prescription for Ceftin 500 m.g. twice per day and Valtrex 500 m.g. twice per day. He did say this would be the last time he would see me because there is no more he can do for me because he doesn't like giving out the strong medications. I have 4 different dermatologists within 20 miles of my house that he gave me their cards so I will call and see one of them. Thanks for all of your support. God bless, John
Toni (firstname.lastname@example.org) from usa, left at 19:34:14- August 11, 2008
John, given that your dermotologist won't try anything new, contact F.I.R.S.T. - Foundation for Icthyosis Related Skin Types. They are the national organization that helps people with rare skin disorders; they may be able to recommend a dermatologist in an area close to you. contact them thru their website: www.scalyskin.org - don't wait, your skin sounds like it's very infected and you need a new dermatologist!
Susan Buckley (email@example.com) from USA, left at 3:42:11- August 11, 2008
To all, I am back on Accutane and it has really worked well. I asked for Protopic from my doctor last week and he gave me some samples as well as a prescription. I've been using it about 5 days. From what I can see, it's really helping. I use it very sparingly, twice a day. This afternoon, when I got home from church, I changed into shorts and my legs looked inflamed. However, I took a shower and much of the scabbing fell off and it is barely red where they were. I am most comfortable with no itching and have tolerated the protopic well. I'm also using coconut oil on rough spots and that has been working well as well.
Since I don't have health insurance and was denied for the 10th time on Friday due to Darier's, I get my prescriptions out of Canada. My doctor didn't know how to do that with the Accutane "I pledge" program but I figured it out and got it. There are several generics that, in my case, work just as well as the brand Accutane. The meds are a fraction of the cost compared to the US. I can give you the names of some reputable Canadian pharmacies if you email me.
Believe it or not, I can't even get life insurance. Go figure. I am healthy and have never had a serious disease (other than Darier's)yet I can't get insured. I'll continue to pass on what works - this is the best my skin has ever been and I thank the good Lord for leading me in the right direction.
Finally, take control of your situation with your doctor. I have had to battle to get what I need based on hours of research that I've done. It's been worth every minute. Susan
John (firstname.lastname@example.org) from USA, left at 2:39:24- August 10, 2008
I think my dermatologist must just be to old and doesn't want to try new things. He put me on prednisone and fluocinodine ointment and the prednisone makes me get alot done because I feel like superman and the ointment burns so bad I feel like I am putting straight alcohol on my skin. I quit using that. I have been using 4 ounces of bleach in my bath water and the oozing is 25% better and the smell is 50% better so I am getting some relief but he still refuses to believe it is herpes related. There are only 2 dermatologist in my neighborhood and one of them is only in her office twice a month so my primary physician referred me to the one I have now and he is about 70 years old. He told me that if I am not better when I go back to see him on the 25th he might put me back on the soriatane and see if he can get it for me through his company that gives him samples. I have a hard time figuring out what antibiotic to use because I am allergic to all sulpha drugs and half of the other antibiotics don't work for me anymore because I have taken them for my darier's so much and I battled cancer for 2 years. Thank you all for your support and I do know one thing for sure. When life gets tough my God is tougher. I will mention the valtrex and the other antibiotic that was mentioned to my doctor and see what he says. God bless, John
Aaron (email@example.com) from US, left at 0:32:24- August 10, 2008
Hi everyone, I start back on the Methotrexate tomorrow morning. The physician's asst told me that when the patient reaches a cumulative dose of 1 gram the drug becomes toxic and sometimes requires a liver biopsy. That's very frustrating given it's the first medication that works. I'll continue to take 5000 mcg of biotin and 2000 mg of lysine and just maybe that'll be enough to keep it in check for a year or more.
Jaime () from U.S.A, left at 14:59:19- August 5, 2008
Carol, domeboro is over the counter. It is used to dry up rashes. It's in a white box with blue lettering. It says it is for poison ivy and stuff like that, but the dermotologist told me to use it when I had the bad herpes outbreaks, and it worked wonders. I have the exact same reaction from the sulfa drugs as you, so yes it may be connected. And I have the same dizziness and loopy feeling from prednisone, but having to take it right now because my face is so red and itchy. Take care
Aaron (firstname.lastname@example.org) from US, left at 0:54:1- August 5, 2008
Hi Carol, Yes the lysine I take is over-the-counter. I take 2,000 mg a day split into a dose in the morning and another at night. I'm going to be taking 5 mg of biotin once I use up the 1 mg tablets. I've been using hair conditioner but I looked at my hairline the other day and thought why waste money on it when I'm balding. I still use Head & Shoulders dandruff shampoo though.
Carol () from , left at 23:14:16- August 4, 2008
JAIME: It's very interesting that the meds combination works for both of us, and that we both are allergic to sulpha drugs. I've often wondered if there was a connection, because one of the things that happens when I take sulpha medications is a burning rash that might actually be my Dariers acting up. But like Prednisone, they also make me feel very sick, dizzy, confused, and "racy." Also, what is domeboro? Is it an Rx, or an over-the-counter drug or ointment? Guess I should read back in the messages to find out!
AARON: Do you take over-the-counter lysine, and at what dosage?
Aaron (email@example.com) from US, left at 20:58:28- August 4, 2008
Hi everyone, I'm going back to the dermatologist this week to give Methotrexate another go. It kept my Darier's in check but after several months of being off of it the symptoms returned. I'll continue to take lysine both to prevent cold sores and widespread infection on my chest and back and to reduce the risk of elevated prolactin levels that Risperdal can cause. I'm still on biotin and ramped up the dose because it does seem to help and is relatively inexpensive.
Jaime () from U.S.A, left at 14:54:52- August 4, 2008
Carol, My Dr. put me on the same exact meds as you when I have an outbreak. And yes it can be deadly, unfortunately. I was lucky to have a Dr. that cares, I could have died back in March. Nobody seemed to know what was wrong with me til I got to the dermotologist. I totally trust him now, before any of my other Dr.'s. And I am allergic to sulfa drugs as well, so is my father who also has DD. It may be connected, who knows. There are so many things that we have to deal with because of this DD, but we have to keep on trucking!! If you get another bad out break, like I told John, try that domeboro for the oozing, I swear by it. Take care
Carol () from Lincoln, Nebraska, left at 14:28:32- August 4, 2008
Ugh! I posted this once and it said it didn't go through, so I had to rewrite the whole thing, even though I DID answer the security question correctly, unless 7 plus 6 doesn't equal 13 anymore...
Let's see if I can remember what I wrote:
JOHN: I have had Dariers for more than 20 years, but it was only correctly diagnosed a few years ago. I am VERY surprised your dermatologist doesn't know about the Herpes connection. That has been my doctor's major concern. During my recent bad outbreak, he ordered a biopsy for it, which thankfully came back negative. But he was worried because he said it can be very serious and even put you in the hospital.
My recent outbreak covered my back, chest, shoulders, tummy, arms, and even my face and ears. The pain was so bad I could hardly move, and yes it did smell a little. My doctor put me on an antibiotic called Cefuroxime (DPS Ceftin), 250mg twice a day; Valtrex three times a day; and two topical ointments. The first is a light cream for day use called Pramosone - hydrocortisone acetate 2.5%, pramoxine HCI 1%. The second is a petroleum jelly-like ointment called Triamcinolone Acetonide 0.1%. He told me to slather it on really thick at night. It's really greasy, so I sleep on a towel to protect the bed. For the pain I used Advil, but I didn't notice it helped much.
My dermatologist also had me taking Prednisone, but I had to stop because I have severe allergic reactions to it. Not sure if it's related, but I am also allergic to sulpha drugs, which limits what I can take for Dariers sometimes.
After a week my outbreak is almost completely cleared up. The only problem was that I got a slight bladder infection, which my regular doctor said was from all the meds and infection washing out through my bladder. Makes sense. That cleared up right away with an over-the-counter medication, as well as cranberry juice and supplements, which was better than going on yet another antibiotic.
I definitely will remember this combination next time! My outbreak was so painful I could hardly move. I looked like a lobster, and my skin felt like it was on fire. The sores were open and weeping, and were visible no matter how many clothes I wore. It's very hot and humid here, so I try to stay indoors by the cooler, and cover up when I have to go out.
I know how painful and embarrassing Dariers can be. I was really happy to find this site. It's nice to be able to talk about it with people who understand what I have been going through.
I hope my information helps.
Carol in NE
Jaime () from U.S.A, left at 22:8:10- August 3, 2008
John, try domeboro packets. They are over the counter and come in a white box with blue lettering. You add about 2 packs to 8-10 ounces of water the use wash cloths or gauge pads or anything and put it on your open sores to dry them up. It always helps me and my dermotologist is the one who told me about it. And you definately need to get a new Dr. Before you get real sick and he has no idea what to do for you. Good luck with everything. Tell your Dr. that you need an antibiotic and antiviral like Valtrex. See what he says, cause your sores do sound like the herpes, and you have suffered long enough. Take care
John (firstname.lastname@example.org) from USA, left at 14:56:3- August 3, 2008
Well I went back to the doctors and he still says he never heard of herpes and darier's being related. I think it is time to change dermatologist because I went to 2 other sites about darier's and it specifically says some patients with darier's gets herpes. I have another appointment with him tomorrow morning because the new medicine is not working at all and I have huge open sores on my chest and back and they are leaking very bad and I don't know about any of you but the smell is bad. I have been taking 3-4 baths a day just to try to get some relief. God bless, John
Jimmy C () from , left at 3:52:6- August 1, 2008
I have had DD for all my life, diagnosed at 10 and still going at 40. dad has it as do two sisters. I found out from a bad experiance that I have Staph on my skin as does a lot of society, So i have to be vigalant about cleanliness. I use a mild daily wash from rite aid for my body wash and Cvs theraputic shampoo and it controls my breakouts. Has any tried clindamycin gel? My Dad gave me some and I have not tried it yet. My nails and ears are the worst. But life goes on and so will me and my DD. Good luck to all.
gary () from USA, left at 4:37:56- July 30, 2008
I was diagnosed in 1966. At that time my dermatologist prescribed massive doses of water soluble vitamin A (500,000 usp units per day)it cleared me up in just a few days. The doctor took blood tests frequently to make sure I wasn't doing any damage to my liver. I have not been able to find water soluble vitamin A for a while now so I am trying topical treatments with not much success. after my initial clear up I was able to cut my dosage in half and maintained clear skin.
Sandy (Sweet2me1999@cox.net) from USA, left at 14:1:38- July 25, 2008
Years ago (believe it was 1999)I searched the web For Dariers,this was the only siteout there on DD I found.
Decided to check again and there are many sites now but, Still today this sight is the most helpful. I finally read all the messages and became brave enough to post.
Thank you all for sharing your feelings and ideas. Sandy
Sandy (email@example.com) from , left at 12:17:18- July 25, 2008
I am 45 and I have had Darier's all my life.
I have it on my scalp, ears, neck, underarm under my Breast and my groin area.
I recently was diagnosed with Herpes.
I never new there was a link with the two until reading all the messages. I changed dematologist and this one told me to take bleach baths 1/2 cup bleach to tub of water. I thought he was crazy. but it seem to help. It kills the bacteria.and it is cheap. He also said we need to alternate meds.Don't use the same all the time.
Hope this help for you all.
May the Lord Bless each and everyone of you.
Susan (firstname.lastname@example.org) from USA, left at 6:24:51- July 24, 2008
For those of you who can't afford your meds to help with Dariers, there is a site called www.freemedicine.com. They help people who don't have health insurance or simply those that are having a hardship paying for the medications. Check it out. They are a liason between the drug manufacturers and the doctor. I've used them in the past with success after I lost my health insurance. There is a one time $10 fee and then they'll send you the forms to give to your doctor. Good luck to everyone who needs it.
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