Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Can New Outbreaks Occur While On Dapsone?

nasalady

By nasalady
in Dermatitis Herpetiformis

Recommended Posts

nasalady Contributor
nasalady
Posted

Husband has DH (at least we're about 99% sure it's DH); he's been taking Dapsone for several weeks now and his blisters were healing and turning purple. Yesterday I noticed that his face was red; by this morning it was clear that he has a new outbreak on his face. He also has a few new blisters on his backside and his knees and elbows are red too.

If he's been glutened (or even if he hasn't), is it possible to have a new outbreak while taking Dapsone? He's taking 100 mg per day.

BTW, these blisters are MUCH smaller and fewer than the original set. The previous rash is still healing well and turning dark purple.

Thanks,

JoAnn

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nasalady Contributor
nasalady
Posted
  • Author
Husband has DH (at least we're about 99% sure it's DH); he's been taking Dapsone for several weeks now and his blisters were healing and turning purple. Yesterday I noticed that his face was red; by this morning it was clear that he has a new outbreak on his face. He also has a few new blisters on his backside and his knees and elbows are red too.

If he's been glutened (or even if he hasn't), is it possible to have a new outbreak while taking Dapsone? He's taking 100 mg per day.

BTW, these blisters are MUCH smaller and fewer than the original set. The previous rash is still healing well and turning dark purple.

Hi there.... :)

I know that more than 100 people have looked at this post so far.....is there really no one out there who's been on Dapsone and experienced new DH outbreaks?

I believe that it is possible to have new outbreaks while on the medication, but it helps to verify it with people who have been there! Please reply if you have any info that may be helpful....thanks!

ravenwoodglass Mentor
ravenwoodglass
Posted

I am sorry that you haven't recieved any replies. One reason may be because many decide that since dapsone can have serious side effects most just go on the diet instead. Just my opinion of course. I would imagine that even with the dapsone new outbreaks could occur if one is still consuming gluten or if they were getting enough CC to keep the antibodies active in the skin. It can take up to 2 years for the antibodies to be completely gone. I did not use dapsone and I had DH pretty severely and for the first year or so my blisters would reappear with even a small amount of gluten. They had however begun healing within a couple of weeks of my being gluten free and the outbreaks became less severe over time. Now if I get a really bad glutening I only get a couple of small blisters and they heal quickly. I don't know if this was helpful or not but I do hope things clear up for him soon. Also do check his toiletries for gluten content including his shaving cream and soaps.

happygirl Collaborator
happygirl
Posted

From: Open Original Shared Link

"Q: What triggers DH?

The simple answer is ingested gluten. But iodine (potassium iodide, iodized salt, kelp), some anti-inflammatories and stress can exacerbate the disease. An area of controversy is whether or not gluten can be absorbed through the skin. Most medical experts say no, only dietary gluten is of concern.

DH can be "exquistely sensitive" to gluten. Since the skin may not be rid of the IgA deposits for 2+ years after starting a gluten-free diet, flare-ups may continue to occur. The skin response is much slower compared to the healing of the intestinal mucosa. In particular, outbreaks of facial and scalp lesions while on otherwise adequate treatment is not uncommon."

nasalady Contributor
nasalady
Posted
  • Author

Thanks, ravenwoodglass and happygirl. I appreciate the info. I've been using salt with no added iodine for cooking but we do need to verify that all of the soaps and toiletries are gluten free.

  • 2 weeks later...
ChemistMama Contributor
ChemistMama
Posted

Nasalady-

Are his outbreaks itchy? When I went on Dapsone my body decided it was going through adolescence again, and I got pimples everywhere!! Not DH, that itches...these are little whiteheads. My face hasn't looked this bad since I was seventeen!! The last time I broke out this bad I was pregnant and the hormones made my skin awful. Ask him if this is the case...he may need acne wash!!

100 mg/day is a high dose, but it's the usual dose when you first go on Dapsone. It will clear up any new lesions in 24-36 hours after ingestion. Search these forums, there are lots of stories of people with DH who were diagnosed years ago before it was linked to celiac, and they took dapsone (25-50 mg.day) and ate gluten, and had no breakouts. At 100 mg a day, it really sounds like his rash is from something else, not gluten. Has he eaten anything odd lately? Maybe he has a food allergy.

Ravenwoodglass is right, make sure there's no cross contamination in your house. Get him his own can opener, and don't kiss him after you've eaten!! ;)

nasalady Contributor
nasalady
Posted
  • Author
Are his outbreaks itchy? When I went on Dapsone my body decided it was going through adolescence again, and I got pimples everywhere!! Not DH, that itches...these are little whiteheads. My face hasn't looked this bad since I was seventeen!! The last time I broke out this bad I was pregnant and the hormones made my skin awful. Ask him if this is the case...he may need acne wash!!

Thanks ChemistMama! Maybe I should have called myself "AstronomerMama"! :)

Unfortunately they do itch....so we think they are a new outbreak of DH, but the good thing is that the new outbreak is much less widespread and is now going away fast.

100 mg/day is a high dose, but it's the usual dose when you first go on Dapsone. It will clear up any new lesions in 24-36 hours after ingestion. Search these forums, there are lots of stories of people with DH who were diagnosed years ago before it was linked to celiac, and they took dapsone (25-50 mg.day) and ate gluten, and had no breakouts. At 100 mg a day, it really sounds like his rash is from something else, not gluten. Has he eaten anything odd lately? Maybe he has a food allergy.

Yes, I know, but I did search thoroughly online and found stories of people on Dapsone who did develop new outbreaks even while taking the medication.

He may have other food allergies though. He mentioned that he had several as a child, but he "grew out of them". I'm not so sure about that. One of them was corn, and of course there's lots of cornstarch in gluten-free foods!

Ravenwoodglass is right, make sure there's no cross contamination in your house. Get him his own can opener, and don't kiss him after you've eaten!! ;)

:lol: No possibility of any gluten contamination from ME, since I was the first one to be diagnosed with celiac disease last fall!! I haven't had any gluten (knowingly, that is) since November! :lol:

Our entire family is now gluten free, and the kids' eczema and keratosis pilaris has either disappeared or improved enormously!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


BooParks Newbie
BooParks
Posted
Husband has DH (at least we're about 99% sure it's DH); he's been taking Dapsone for several weeks now and his blisters were healing and turning purple. Yesterday I noticed that his face was red; by this morning it was clear that he has a new outbreak on his face. He also has a few new blisters on his backside and his knees and elbows are red too.

If he's been glutened (or even if he hasn't), is it possible to have a new outbreak while taking Dapsone? He's taking 100 mg per day.

BTW, these blisters are MUCH smaller and fewer than the original set. The previous rash is still healing well and turning dark purple.

Thanks,

JoAnn

Hi, I was diagnosed with DH in May of 2000 after spending years with those itchy blisters and being told it was poison ivy. I also have many serious allergies, like a 10 out of 10 on the allergy scales. especially the molds and yeasts which are common in wheat products. Thus why I'm believing I had leaky gut. Anyhow, when I was diagnosed by a doctor, at Vanderbilt University Medical Center in nashville, the doctor told me I had the highest IGA counts along with worse case of DH they had every seen. Biopsy was sent to John Hopkins in California. I also was on many steriods prior to diagnosis and was started on 100mg of Dapsone. Some of the blisters on my knees where the size of baseballs and had become quite infected. The Dapsone helped right away and within a week I was clearing out really nice. I'm thinking I had a couple of small break outs on my feet and elbows even on the Dapsone. When you say the backs of his elbows and knees though I have to wonder if that is the soft tissue area?? I never broke out in soft tissue areas outside of my waiste, mouth and the top of my head. It was my elbows, knees, head, feet, fingers, mouth and waist areas. It took three years of being strict gluten-free to get off the Dapsone completly with only minor out breaks if I messed up. Yes, iodine can make him break out as perfumed/die added detergents or fabric softeners or sitting out on the grass in the yard. Wishing you best.

nasalady Contributor
nasalady
Posted
  • Author

Thanks for your reply! Wow, three years! :(

I may not tell him that!

When you say the backs of his elbows and knees though I have to wonder if that is the soft tissue area?? I never broke out in soft tissue areas outside of my waiste, mouth and the top of my head. It was my elbows, knees, head, feet, fingers, mouth and waist areas.

Actually what I said was, "He also has a few new blisters on his backside and his knees and elbows are red too." By backside I mean where he sits down.... :lol:

DH typically appears on the buttocks, knees, and elbows, although it can show up in LOTS of other places too.

Thanks again for sharing!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,962
    • Most Online (within 30 mins)
      7,748
    AlissaW
    Newest Member
    AlissaW
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.