Dapsone for Dermatitis Herpetiformis User Reviews

• Water...
• February 26, 2008

"I was diagnosed in 1998 via papular biopsy by a US Air Force MD. I am so glad he knew right that minute what medication I needed. I had been treated for everything from scabies to exzema and beyond with everything but the right thing! It had been going on for about 4 years and I was going insane with the itching, oozing, infected elbows, knees, and groin area! These areas were also painful at the same time. It is a "miracle" drug for me!!!!"

• KORONA
• August 19, 2013

"My Dermatitis Herpetiformis started showing up around 7th grade. For three years, my parents took me to countless doctors. Before being diagnosed, I don't think I wore a short sleeve shirt in public, no matter how hot it was, for fear of being ridiculed for my disgusting skin. Finally I was diagnosed and prescribed Dapsone, and this medicine has helped me overcome this painful and mentally exhausting disease. I know those who have Dermatitis Herpetiformis know what I mean when I say this disease can control your life if not treated. I was scared to go to the pool because of it. Dapsone has done wonders, and I've been lucky enough to not have a single side effect (knock on wood)."

• dugra...
• February 23, 2012

"I itched for about 5 years. There wasn't anyone who could tell me or treat my ailments. saw a doctor, he did some blood tests, found out the underlaying problem. I also had Celiacs disease along with the Dermatitis Herpetiformis. I had sores on my body, you wouldn't believe. To this day I have scars in several places from itiching. This medicine is a miracle. I quit taking it for about 3 years, now I am back on it. Thank the man up above for creating people to do things like this for us! By the way, this was before Celiac was as common as it is now."

• Tony
• Taken for 2 to 5 years
• November 17, 2019

"I've been using Dapsone for dermatitis herpetiformis (which is the rash associated with celiac disease) 4 years and the truth is that this drug is a miracle. I was diagnosed with celiac and I always carry this drug with me. I drive truck all over the U.S. and for me or is very hard to find food without gluten. Even though they give me a menu of food with no gluten, there is possible some cross contamination in it."

• Paul
• Taken for 10 years or more
• August 25, 2018

"I've been taking Dapsone for DH (dermatitis Herpetiformin) since 1993 through to now Aug 2018 with no issue. I did find though dapsone has a reactions with NSAID's, even things like voltaren cream. You break out in lesions and you think you've missed a tablet or got a large dose of gluten somehow, so you take more dapsone to compensate and the lesions get worse. Took a few years to work it out on my own, then google it and lots of people have found the same. Great drug but don't take NSAIDs."

• Dr vi...
• Taken for 10 years or more
• March 18, 2018

"I was diagnosed for DH in September 1996 by my skin specialist...and he put me on Dapsone 100 mg on same day and since that day till today i.e,March 2018 I m taking dapsone 100 mg daily. Without taking it for single day I develop blisters which are extremely painful. In Jan 2015 I was diagnosed with idiopathic dilated cardiomyopathy. I'm always anemic with HB not going above 10 gm/ dl. My doc attribute this anemia with Dapsone from last 22years I'm taking this medicine without any major side effect. I'm on gluten free diet also from many years but that doesn't help to reduce my dapsone dosage....life is getting miserable at age 43 yrs due to many medicines I have to take."

• Anonymous
• April 13, 2009

"In two days I had wonderful relief from severe dermatitis herpetiformis and was amazed. But in just one week came a lot of the severe side effects and not sure that I can continue on dapsone. I have been on 25mg a day instead of the 50mg my doctor prescribed. A few days later I tried reducing that by cutting the pill in half with no relief from the severe side effects."

• Glen
• Taken for 10 years or more
• March 8, 2018

"Diagnosed with D.H. in 1992, Went thru several Doctors before one figured it out. Drug has worked great without any known side affects. I discovered I needed much less than the usual prescribed 100 mg. I found that 25-50 mg did the trick for years. Now after 26 year I'm using 100 mg more regular. My DH started in the knees and elbows. A topical cream would stop it, only to pop up somewhere else on my body supposedly where the skin is "thin" ."

• SWEDE
• Taken for 1 to 6 months
• October 7, 2018

"After a year, ten doctors, every blood test known to man and six biopsies. Finally found a Dermatologist who knew what she was doing. She got me started on Dapsone. Four weeks later now. Blisters are all gone. Nothing but the scars left. And no side affects. Fingers crossed. Great drug!!!!!"

• Pgzman
• Taken for 2 to 5 years
• April 1, 2020

"I was diagnosed with celiac sprue after a colonoscopy in the mid 1990s. Had never heard of this before. Was told to avoid any type of gluten. Easier said than done. After 10 or so years of moderate gluten intake I developed itchy blisters above ankles, on knees and elbows. It would wake me our of a dead sleep. Would scratch until they bled and beyond. Have scars to prove it. Looked up celiac online and found out about dermatitis herpetiformis (DH). Went to a dermatologist and as soon as he saw my knees and elbows said "classic DH". He took biopsy and 10 days later was on Dapsone. I only take it when I get flare-ups (50mg for 3-4 nights). I have multiple autoimmune disorders diabetes, rheumatology, celiac. This med has worked great, however, it has raised my eosinophil levels which may be the cause of my eosinophilic asthma."

• wfair
• Taken for less than 1 month
• February 3, 2021

"Be very careful with dapsone. I developed numerous issues including shortness of breath and general fatigue that were severe enough my physician ordered numerous hospital test that were all negative. Stopped dapsone and all went away."

• Dave...
• Taken for less than 1 month
• October 1, 2021

"For 10 years I had poison ivy-like rashes on my knees, elbows, and backside. I finally - FINALLY - took the advice of my wife and fired my dermatologist, and went to see an allergist instead. He first tried the easier/cheaper/safer route of high-dose antihistamine for 4 weeks, which did nothing. After being okayed by a hematologist, we then gave dapsone a try. I took one 25 mg tablet per day for just 7 days, and the rashes completely disappeared, confirming that they were DH associated with my celiac disease. I had zero side effects. There was also zero impact on my bloodwork (the hematologist wanted a 7 day follow-up to monitor me). I will save the rest of the tablets for if/when the rashes return; I have remained rash-free without the dapsone now for 10 days."

• Sean
• Taken for 2 to 5 years
• March 14, 2021

"I’ve taken Dapsone for 3 years, alternating from 100-300mg daily depending on flair ups of DH (Dermatitis Herpetiformis). The drug works, but it zaps all the energy out of me. I feel like I could lay down and just die in my sleep sometimes. I try to be gluten free, but it’s damn near impossible when going to restaurants with the family. I’m going to try harder to make most meals at the house with known GF ingredients and eat just salad with grilled meat when out and about. I would take 300mg daily if I could get away with it because it definitely works, but the side effects literally take all the oxygen out of your red blood cells making you weak and lifeless. When I first stated on Dapsone I was taking 300mg daily due to the crazy rashes. It’s when someone noticed I was gray and my O2 saturation was in the 80’s, I took much less."

• Bella...
• Taken for less than 1 month
• February 13, 2021

"I just got diagnosed with either DH or Linear iga about a month ago after suffering for nearly 3 months of itching uncontrollably day and night. My regular Dr tried antibiotics and steroids but neither one worked so I finally had enough and went to see a Dermatologist. Well she put me on Dapsone because it is supposed to work for either disease and I'm on a gluten free diet for 2 weeks just to be sure if it is DH. Well so far Dapsone hasn't really worked. I thought it was til about 2 days ago. I've started breaking out in new blisters. Some in new places but some in older scars and I'm really starting to itch like mad again. I was so excited that I found something that was gonna help me and I wasn't gonna go crazy any more but it's only been a disappointment in the end. I'm happy for those that the medicine worked I just wished it had worked for me."

• 40 ye...
• Taken for 10 years or more
• October 20, 2022

"I remember symptoms at age 4 rubbing my elbows against the edge of the dinner table. Multiple doctors over the next 24 years no relief. Finally met a doctor who recognized it immediately at age 28. Took dapsone that day and slept through the night for the first time in my memory. Been taking 25-50 mg for 40 years with no noticeable side effects. Stop itching for me in about 8 hours if I forget to take it for a couple days. It’s a miracle for me but I know others it does not work for. I purchase through drug discount companies with a better price than my insurance."

• Bud
• Taken for 5 to 10 years
• June 22, 2020

"After relying on dapsone for more than 10 years to control dermatitis herpetiformis I had very significant liver damage. Following about a year of EXTREMELY stringent gluten-free diet I was able to discontinue dapsone, but when unexpected gluten exposure brought back skin symptoms, just a few weeks I’d dapsone treatment crashed my bilirubin levels."

• Anonymous
• January 29, 2011

"I took Dapsone for 20 years and without it I could not work or sleep. It's been a life saver for me."