Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Dapsone? 100 Mg For 20 Years?

33 in Ca Celiacs and DH
 Share

Recommended Posts

33 in Ca Celiacs and DH Rookie
33 in Ca Celiacs and DH
Posted

Does anyone else take Dapsone for DH? I haven't found much research on the risk/harm that Dapsone causes after long periods of time. Any insight on this would be great!

I take 100 mg daily. When/if I miss a dose, I get blisters within 30 minutes. The blisters did not subside when I was on the gluten-free diet for 6 months. Is that common?

Thank you so much!!

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Like I said on the other thread, I can't believe a doc would give it to you for 20 years and not insist you eat gluten free. I suppose you will have grounds for a malpractice suit but 20 years of damage isn't worth the money to me.

eatmeat4good Enthusiast
eatmeat4good
Posted

Yes, that is very common. I have DH and I am one year gluten free and I still have 4 sores that flare from time to time. For DH some people have to avoid not only gluten but iodine also. It has been found that iodine can keep the antibodies active in the skin causing eruptions even when one is gluten free. Iodine is found in iodized table salt, you can use uniodized table salt, it is also in all shellfish. DH lesions, blisters and outbreaks can take up to 2 years being totally gluten free to subside. The antibodies remain in the skin for up to 10 years. At any time I get accidental cross-contamination or trace gluten, I get blisters and flares for several weeks.

I took dapsone for one week. It was wonderful and worked great, but the second week when we upped it to 100 mg, I broke out in an all over my body rash of pinpoint red dots. Others get anemia...there is research on it if you google the long term side effects of Dapsone..you will find other things like muscle weakness. It is strongly advised that people taking Dapsone have blood tests every two weeks to a month to monitor the blood to be sure the negative effects are not happening. I had to stop taking it immediately and it took a while for the rash to subside. You must eliminate gluten entirely and limit iodine until the rash heals completely. My Endocrinologist said it wouldn't be harmful to limit iodine for up to 3 months, but to add it back. But you have to make your own decision on the iodine issue. Some people don't feel comfortable eliminating or limiting it. Iodine is also found in asparagus, eggs, milk products, and shellfish. Milk products often contain carageenan and that is a seaweed and therefore high in iodine.

If you have DH, Dapsone can control the rash, but the damage from gluten is still happening. DH Celiacs have a higher incidence of being supersensitive to gluten and also a higher incidence of the cancers associated with Celiac. Get on the web and read about Dermatitis Herpetiformis. I think your Dr. is not doing you any good to give the medication without requiring a gluten free diet. It's scary to me. Even with strict avoidance of gluten and iodine DH can still take a long time to heal and the antibodies take a long time to leave the skin. I will send you some articles when I have more time. But for now browse the DH forum and google DH so you know what you are dealing with. It is a very serious disease.

33 in Ca Celiacs and DH Rookie
33 in Ca Celiacs and DH
Posted
  • Author

Wow! Thank you!! I didn't realize that DH was as serious as Celiacs. I look forward to reading additional doc's when you have the time to send them. :). I will research Dapsone and DH. I have tried a few different Dieticians and have been so disappointed with their lack of knowledge.

Iodine too! Geez, shellfish is my all time favorite food with the second being Chineese food. I am trying to quit smoking... Now I am going to add the gluten-free diet... But in return- I'm adding LIFE!!

Thank you so much!! The info I have received from my only 2 post is more than I have received in total- for the last 20 years!

Hopeful1950 Explorer
Hopeful1950
Posted

It looks like the other responses pretty much say it all. Before docs realized that DH was from celiacs, they just knew that Dapsone controlled it and didn't really know why. But in more recent years after they realized that the problem was occurring in the gut from eating gluten, they give Dapsone to control the uncomfortable symptoms along with a strict gluten free diet to prevent accumulation of more antibodies in the skin.

My main comment is that I'm jealous that you are able to take Dapsone 100 mg without feeling bad! It kicked my butt! I felt awful when I took it. So awful that the relief of the itching wasn't worth it.

Hopefully you have been lucky and haven't sustained terrible damage to your gut as a result of the docs not telling you that you need to be gluten free.

lovegrov Collaborator
lovegrov
Posted

I took dapsone for more than 20 years, mostly 25-50 mg a day. My father took it for 30. Our doctor did not know about celiac But he DID urge us to quit eating wheat, which we didn't want to do.

Dapsone can have side effects but if you look the really serious ones are rare and pretty much reverse when you stop taking it or cut back. I have never heard of doing blood tests every two weeks or even once a month, EXCEPT right at the beginning to get the dose regulated.

richard

Sam81 Apprentice
Sam81
Posted

Does anyone else take Dapsone for DH? I haven't found much research on the risk/harm that Dapsone causes after long periods of time. Any insight on this would be great!

I take 100 mg daily. When/if I miss a dose, I get blisters within 30 minutes. The blisters did not subside when I was on the gluten-free diet for 6 months. Is that common?

Thank you so much!!

I was on Dapsone 50-100mg for 12 years for "Bechets Syndrome" - (diagnosed at 16) stopped taking it nearly 2 years ago and am riddled with Celiac DH symptoms. Some Dr's are thinking I was misdiagnosed. I was left to manage it on my own with no regular blood testing and was always severly anaemic by the time they did do blood tests. Iron levels are still low but not as bad since being off it. If I forgot to take a tablet I would get a rash come up - looked like hives, ive just discovered. Now I permanently have them, suggesting the Dapsone may have helped. I'm not diagnosed with Celiac DH but I do feel I tick all the boxes and have pictures Im trying to post...

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

Celiac.com Sponsor (A8-M):


  • 7 years later...
Ronnie d Apprentice
Ronnie d
Posted

below are links from an australian military study of the effects of dapsone on their men in viet nam.

the were checking for instances of cancer,poor health, etc.because in the beginning all soldiers were given dapsone for malaria.

 

 

https://www.tga.gov.au/sites/default/files/auspar-dapsone-171201.pdf

https://www.aihw.gov.au/reports/veterans/dapsone-exposure-australian-vietnam-service/contents/summary

 

Ermanno Newbie
Ermanno
Posted

I have had DH since I was around 18 I’m 61, been on Dapsone 100mg for at least 40 years but only take 1/2 tablet 50 mg day. Got Celiac in my late 40’s DH is a horrible thing to have, I end up scratching all night causing bleeding. I break out if I just have a bit of Gluten hidden in something. I wish there was a cure

Ronnie d Apprentice
Ronnie d
Posted

have you any side effects from the dapsone?

it appears to me to be a rather harmless drug if you're not of  Asian, or Mediterranean descent, or anemic.

(a)"Severe complications include hemolytic anemia in patients of Asian and Mediterranean decent who have a deficiency in glucose-6-phosphate dehydrogenase (G6PD)"

(a) Dapsone - American Osteopathic College of Dermatology (AOCD)

Ermanno Newbie
Ermanno
Posted
(edited)
9 hours ago, Ronnie d said:

have you any side effects from the dapsone?

it appears to me to be a rather harmless drug if you're not of  Asian, or Mediterranean descent, or anemic.

(a)"Severe complications include hemolytic anemia in patients of Asian and Mediterranean decent who have a deficiency in glucose-6-phosphate dehydrogenase (G6PD)"

(a) Dapsone - American Osteopathic College of Dermatology (AOCD)

No side effects that I know of, it sure clears up the rash though. When I get it severe I’ll take 2-100mg pills and it’s like magic. I am Italian by the way.

Edited by Ermanno
  • 3 weeks later...
Ronnie d Apprentice
Ronnie d
Posted

it is magic.worked immediately on me.

I'm going at the end of the month for blood work to make sure everything is up to par.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,293
    • Most Online (within 30 mins)
      7,748
    Jschwind351
    Newest Member
    Jschwind351
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      is my celiac disease gone?

      By Wheatwacked · Posted

      I should point out that iodine is known to exasperate dermatitis herpetiformis blistering. It can take several months or even years of a strict gluten-free diet for the IgA-TG3 deposits to clear from the skin. After the skin completely heals, iodine may no longer trigger symptoms. "The circulating antibodies disappear and skin symptoms resolve as a result of gluten-free diet but the cutaneous anti-TG3 IgA deposits may persist for several years. " Missing Insight Into T and B Cell Responses in Dermatitis Herpetiformis
    • Wheatwacked
      is my celiac disease gone?

      By Wheatwacked · Posted

      I get my supplements f from Pipingrock.com close to 10 years now. Good quality, prices, ship  worldwide.  My 25(OH)D is at 93 ng/ml after 10 years taking. In 2019 it had still only gotten to 47 ng/ml.  Celiac Disease causes low D from malabsorption. High Potency Vitamin D3, 10,000 IU, 250 Quick Release Softgels 4.8 out of 5 stars, average rating value. Read 1662 Reviews. Sale price$10.70 Regular price$21.39 Basil Carcinoma.  Basil cell carcinoma is the result of failure of the immune system to recognize fauty DNA in cells. It is iodine that causes apoptosis, killing old and defective cells.  Not enough vitamin D to control the immune system and not enough iodine to do the job.  I had a sebaceous cyst, my seventh facial cyst, in 2014.  It started looking like a blackhead, but grew (Third eye blind).  All my 7 previous cysts had drained and healed normally.  When I drained this, there was a hairball the size of a BB and it would not heal.  This was one of many reasons I started Gluten Free.  I chose to not have it surgically removed, because I realized I had nutrient deficiencies that were causing slow healing.  By 2015 I realized it was Iodine deficiency and started eating seaweed, which helped my muscle tone, but not the healing.  The warnings on iodine from the gov't were so scary, I was afraid to use them.  Turns out it is all based on one study on rats in 1948. "The Wolff-Chaikoff Effect:   Crying Wolf?"   Last year I started taking 600 mcg a day and it is reversing my glaucoma and fixing muscle tone, hair nails and skin all returning to healthy,  Brain fog, which had improved dramatically on Gluten Free diet, my thinking got even clearer with the iodine. Finally the cyst my bellwether since 2014, began to heal.  So I had it biopsied  in July 2025, came back basal cell carcinoma.  With the Iodine (Piping Rock Liquid Iodine 12 drops a day 😃 = 600 mcg) is healing normally and I have a follow up in December.  By then it will have healed.  It is scabbing over like a normal wound.  In 1970 the US stopped using Iodine as a dough modifier.  The daily intake of Iodine dropped in the US 50% between 1970 and 1984.  Also, prescriptions for thyroxine have doubled.  150 mcg the RDA is not enough for anything more than preventing goiter.  Growing up in the sixties just 2 slices of bread had 200 micrograms of iodine, add a glass of milk and iodized salt and you're at 300 mcg a day.  The safe upper tolerable limit in the US is 1000 mcg.  In Japan it is 3000 mcg and the average Japanese, traditional diet, averages above 1000 mcg.  Remember when in the 80's our schools were loosing competitions to Japanese schools?  Iodine.  And Japan has 50% less breast cancer.  Nicer hair nails and skin.  It the US our kids are getting dumber, more flabby.  Fertility is dependant on enough iodine, also. 600 mcg.
    • numike
      is my celiac disease gone?

      By numike · Posted

      69yo M I have had skin cancer basal  I use a higher quality Vit D https://www.amazon.com/Biotech-D3-5-5000iu-Capsules-Count/dp/B00NGMJRTE
    • Wheatwacked
      is my celiac disease gone?

      By Wheatwacked · Posted

      Your high lactulose test, indicating out of control Small Itenstinal Bacterial O,vergrowth is one symptom.  You likely have low vitamin D, another symptom.  Unless you get lots of sun.   Celiac Disease is a disease of malabsorption, often leading to subclinical vitamin deficiencies.  A lot of people have these symptoms just before an acute phase of Celiac Disease.  Each of the symptoms can have multiple causes that are not celiac disease,  but when you start having multiple symptoms,  and each symptom is treated as a separate disease,  you have to think, maybe these are all one cause. celiac disease. There is a misconception that Celiac Disease is  a gastrointestinal disease and symptoms are only gastro related.  Wrong.  It is an autoimmune disease and has many symptoms that usually are disregarded.  I made that mistake until 63 y.o.  It can cause a dermatitis herpetiformis rash,  white spots on the brain.  It caused my alcoholism, arthritis, congested sineses, protein spots on my contacts lenses, swollen prostate, symptoms that are "part of aging". You may be tolerating gluten, the damage will happen. Of curiosity though, your age, sex, are you outside a lot without sunscreen?  
    • trents
      is my celiac disease gone?

      By trents · Posted

      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
×
×
  • Create New...