Dapsone timing

[accio.retro]

Hello! Newbie here. I have recently been diagnosed with DH. The biopsy was inconclusive, but I have been gluten free for 3 months so that could play into it. She diagnosed me on presentation and started dapsone a week ago, 25mg twice a day. Initially, I noticed a huge improvement in my itching. Then Monday morning (Day 6) and this morning (Day 8  ) I woke up at 3:00am with horrible itchiness and burning. Both nights previous I took my evening Dapsone at 6pm. Do you think it’s possible that the medicine is just getting out of my system? Has anyone experienced issues with when you take the Dapsone? 
 

I am super discouraged and have been checking every little thing I’ve been eating to make sure I’m not getting glutened. 
 

Thanks for your help!

Edited September 25, 2019 by accio.retro

[cyclinglady]

I confess that I do not have DH, but I have read the DH section of the forum which you might find helpful too.

Know that the antibodies can take forever to exit the skin.  The rash can flare for no specific reason (or easily traced reason).  DH sufferers seem to be super sensitive.  Even to tiny trace amounts that might be fine for the average celiac.  Consider avoiding even certified gluten-free processed foods or grains for a while.  Check out the AIP diet (Autoimmune Paleo) or Dr. Fasano diet (celiac researcher).  Temporarily reduce iodine in your diet (e.g. fish, etc).  This can make the DH rash worse. 

These are my tips, but again, read the DH section.  Only a few active members have DH.  One should be along soon to offer advice.  Be patient!  ?

Welcome to the forum.  

[jkjoller]

Hello- I was in the same boat. I'm a 54 yr old man who never had an issue. Then broke out with a rash on my chest, back of my head and groin. The itching was so bad I was going night after night not able to sleep. Went to my dermatologist (3 different ones), family doctor, gastroenterologist and others. No one knew what it was. Took high doses of antibiotics, creams and even bleach baths. You name it, I tried it. Until finally on a followup derma visit, my doctor said she had read about DH (this was 2 years of misery until she figured it out!). She did a skin biopsy and it came back positive. She said the only "cure" was to stop gluten completely. In the meantime she prescribed Dapsone (the Dapsone made me feel awful) as she told me it can take months for the gluten protein to leave my body. The Dapsone did stop the itching (for the most part) but once I started the gluten free diet (and after about 3 months or so), it slowly went away. I also found a gastroenterologist who specialized in knowing about gluten/Celiac and how it affects your body. He did a biopsy and it came back negative. So it was determined I have a gluten intolerance but not Celiac disease. I'm off the dapsone now and watch what I eat. Sometimes gluten sneaks in and it will cause a few itchy bumps/blisters but nothing like I experienced the first time. But for the most part, a gluten free diet has me clean of all DH symptoms and off the Dapsone.

Fun Fact: Did you know that Dapsone is actually the drug developed and used to treat leprosy?

[Ging]

So sorry to hear about your troubles.  I was diagnosed with DH and Celiac  bit over a year ago.  My doctor and I decided to not use Dapsone because of the side effects, but also because I'm incredibly lucky (compared to what I've read here from other DH sufferers) not to have 'severe' itching - still want to claw my skin off sometimes, but I'm able to control it.  However, as Cyclinglady said, I seem to be incredibly sensitive and certified gluten free products are often sources of breakouts for me.  There are times that I also seem to have breakouts for absolutely no reason (discouraging as you try to weed out problem food) and that is more than likely due to remaining antibodies in my system.  So sadly, sometimes you can do everything right and still break out.

Again, as others have said, you may have to avoid even the certified gluten free products or be willing to test knowing you may have a reaction.  The other day I found out my mustard was an issue.  It's a constant learning process.  Give yourself a break and remember that sometimes it's nothing you've done or haven't done.  Keep checking and give it some time and keep your doctor in the loop!  

Wishing you all the best.

[cyclinglady]

2 hours ago, jkjoller said:

Hello- I was in the same boat. I'm a 54 yr old man who never had an issue. Then broke out with a rash on my chest, back of my head and groin. The itching was so bad I was going night after night not able to sleep. Went to my dermatologist (3 different ones), family doctor, gastroenterologist and others. No one knew what it was. Took high doses of antibiotics, creams and even bleach baths. You name it, I tried it. Until finally on a followup derma visit, my doctor said she had read about DH (this was 2 years of misery until she figured it out!). She did a skin biopsy and it came back positive. She said the only "cure" was to stop gluten completely. In the meantime she prescribed Dapsone (the Dapsone made me feel awful) as she told me it can take months for the gluten protein to leave my body. The Dapsone did stop the itching (for the most part) but once I started the gluten free diet (and after about 3 months or so), it slowly went away. I also found a gastroenterologist who specialized in knowing about gluten/Celiac and how it affects your body. He did a biopsy and it came back negative. So it was determined I have a gluten intolerance but not Celiac disease. I'm off the dapsone now and watch what I eat. Sometimes gluten sneaks in and it will cause a few itchy bumps/blisters but nothing like I experienced the first time. But for the most part, a gluten free diet has me clean of all DH symptoms and off the Dapsone.

Fun Fact: Did you know that Dapsone is actually the drug developed and used to treat leprosy?

What?  If you have a positive DH diagnosis from your dermatologist based on a skin biopsy, you have celiac disease.  Those celiacs who have DH often have little or no intestinal damage.  That is because the antibodies gravitate to the skin instead of the small intestine.  Also, small intestinal damage can be spotty.  It can also heal in as little as two weeks on a gluten free diet.  If you were gluten free when you had the small intestinal biopsies, the biopsies would be negative.  I am not so sure your GI was celiac-savvy.  All celiac research centers require you to be on a full gluten diet daily  2 to four weeks prior to an endoscopy.  

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

It looks like you may have had less intestinal damage that the average celiac because your body prefers your skin.  Therefore a gluten free diet probably helped you heal faster.  

Back to your dermatologist.  The gluten protein does not stay in your body.  It gets removed along with your steak and potatoes at a normal digestive process time.  A celiac reacts to gluten which triggers an autoimmune response which can be in the gut or in your skin.  It usually takes more time to eliminate the IgA deposits in your skin which can flare up for no easily known reason.  DH suffers need to be very strict with their diet.  

Learn more:

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

I am glad you are feeling better.  If you have a positive skin biopsy, you have celiac disease!  

Edited October 1, 2019 by cyclinglady

[accio.retro]

Thank you everyone for your responses. I ended up having the worst flare ever last Wednesday. My dermatologist doubled my dose of Dapsone and by the morning things were MUCH better. I feel like a different person. I have yet to experience any side effects from the Dapsone thankfully. I just want to take it for a few months to give the Gluten Free diet a chance to work. I have been gluten-free for 4 months on 10/9/19, but I've definitely had some glutening along the way unfortunately. 

[NoGlutensToday]

I highly recommend reading up on the work of Dr. Fasano, and trying the Fasano diet. I went undiagnosed for years, and suffered from DH on my face and back. I went gluten free, but continued to have horrid symptoms for a couple years after discovering it was celiac. It wasn't until I followed the Fasano diet that I started to recover. I went from being a shell of myself and unable to work to playing sports again and holding down two jobs.

The Fasano diet involves going on a strict diet that eliminates processed foods early on, and little by little you can reintroduce foods to your diet. It allows your body to heel, while slowly reintroducing foods.

I also take Dapsone. After six months or a year, as I started feeling better, my doctor suggested that I could reduce the dose to half the original amount.

Hope you're feeling better! And keep asking questions...this forum has a wealth of knowledge.

[squirmingitch]

On 10/1/2019 at 1:39 PM, cyclinglady said:

What?  If you have a positive DH diagnosis from your dermatologist based on a skin biopsy, you have celiac disease.  Those celiacs who have DH often have little or no intestinal damage.  That is because the antibodies gravitate to the skin instead of the small intestine.  Also, small intestinal damage can be spotty.  It can also heal in as little as two weeks on a gluten free diet.  If you were gluten free when you had the small intestinal biopsies, the biopsies would be negative.  I am not so sure your GI was celiac-savvy.  All celiac research centers require you to be on a full gluten diet daily  2 to four weeks prior to an endoscopy.  

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

It looks like you may have had less intestinal damage that the average celiac because your body prefers your skin.  Therefore a gluten free diet probably helped you heal faster.  

Back to your dermatologist.  The gluten protein does not stay in your body.  It gets removed along with your steak and potatoes at a normal digestive process time.  A celiac reacts to gluten which triggers an autoimmune response which can be in the gut or in your skin.  It usually takes more time to eliminate the IgA deposits in your skin which can flare up for no easily known reason.  DH suffers need to be very strict with their diet.  

Learn more:

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

I am glad you are feeling better.  If you have a positive skin biopsy, you have celiac disease!  

cyclinglady posted a perfect answer. I've been on a little break for a while & am trying to catch up a little bit. I was going to reply to jkjoller but cyclinglady said what I would have & she's done a bang up job of it! 

[squirmingitch]

On 10/1/2019 at 1:54 PM, accio.retro said:

Thank you everyone for your responses. I ended up having the worst flare ever last Wednesday. My dermatologist doubled my dose of Dapsone and by the morning things were MUCH better. I feel like a different person. I have yet to experience any side effects from the Dapsone thankfully. I just want to take it for a few months to give the Gluten Free diet a chance to work. I have been gluten-free for 4 months on 10/9/19, but I've definitely had some glutening along the way unfortunately. 

I am so glad to hear you're doing so much better! I just want to caution you to get rabid about not getting any cross contact. Because you are on Dapsone, it is going to mask the rash which too often gives one a false sense of security b/c you can't tell when you've been glutened. So just be aware of that & don't take any chances.