Can New Outbreaks Occur While On Dapsone?

[nasalady]

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

[nasalady]

  nasalady said:

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]

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]

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]

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.

[ChemistMama]

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]

  ChemistMama said:

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.

  ChemistMama said:

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!

  ChemistMama said:

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!!

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!

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

[BooParks]

  nasalady said:

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]

Thanks for your reply! Wow, three years!

I may not tell him that!

  BooParks said:

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....

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

Thanks again for sharing!