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Can You Take Dapsone While Pregnant

jodikris

By jodikris
in Dermatitis Herpetiformis

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jodikris Apprentice
jodikris
Posted

I am currently 19 weeks pregnant and my DH has come back. I am not living gluten free because after biospies both internal and external 4 doctors have decided I only have the skin problem not the intestinal issues. I avoid wheat but I do eat some on occassion. I haven't had a break out in 8 months and got one this morning. I am scared to take my Dapsone while pregnant. I left a msg with my OBGYN but I wanted to see what you guys thought......

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Ursa Major Collaborator
Ursa Major
Posted

Well, first of all I think your doctors are all idiots. If you have a confirmed diagnosis of DH, you automatically have a firm diagnosis of celiac disease. Everybody with DH has celiac disease, but not everybody with celiac disease will have DH.

Maybe you don't have severe villi damage YET. Or it got missed when taking the biopsies (a very common occurrence). But you do have celiac disease and absolutely NEED to be gluten-free. Not just sort of wheat free, but completely, 100% gluten-free. Otherwise you will not just risk outbreaks of DH, but you will also risk the life of your unborn baby.

One of the symptoms of celiac disease is miscarriages and premature labour. You don't want to risk that!

And no, I can't imagine that Dapsone is safe to take while pregnant. It is a very powerful drug.

Please, for the baby's sake and your own sake, start eliminating ALL sources of gluten right now! The DH will likely go away then. Because the only valid treatment for it is the gluten-free diet, the Dapsone only masks symptoms. It won't heal it.

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buffettbride Enthusiast
buffettbride
Posted

I am just going to quote Ursa Major because she is completely right on.

Well, first of all I think your doctors are all idiots. If you have a confirmed diagnosis of DH, you automatically have a firm diagnosis of celiac disease. Everybody with DH has celiac disease, but not everybody with celiac disease will have DH.

Maybe you don't have severe villi damage YET. Or it got missed when taking the biopsies (a very common occurrence). But you do have celiac disease and absolutely NEED to be gluten-free. Not just sort of wheat free, but completely, 100% gluten-free. Otherwise you will not just risk outbreaks of DH, but you will also risk the life of your unborn baby.

One of the symptoms of celiac disease is miscarriages and premature labour. You don't want to risk that!

And no, I can't imagine that Dapsone is safe to take while pregnant. It is a very powerful drug.

Please, for the baby's sake and your own sake, start eliminating ALL sources of gluten right now! The DH will likely go away then. Because the only valid treatment for it is the gluten-free diet, the Dapsone only masks symptoms. It won't heal it.

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ItchyMeredith Contributor
ItchyMeredith
Posted

I am sorry to say it but she is right. Your doctors are clueless. I have no GI symptoms....I just have DH....but DH is celiac disease and you ARE causing internal damage when you eat gluten. I read that celiacs that do not have GI symptoms have the same increased risk of lymphoma and other cancers. The risks to your child are also increased. Please read up on celiac disease. Check out Dr. Green's book Celiac Disease The Hidden Epidemic and you will never eat gluten again.

Good luck on your pregnancy- best wishes.

Meredith

----Dapasone is not okay to take while pregnant or breastfeeding.

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ravenwoodglass Mentor
ravenwoodglass
Posted

No it is not okay, this drug has some pretty serious adverse effects connected with it even for you:

This is from the PREMA-EU web site,

"The main adverse effects of dapsone are: 1. haemotoxicity ( e.g. methaemoglobinemia, haemolysis, agranulocytosis) 2. hypersensitvity ( e.g. dapsone hypersensitivity syndrome and erythematous reactions: dermatitis, Stevens-Johnson syndrome, toxic epidermal necrolysis) and to a lesser extent: 3. others e.g. peripheral neuropathy, hepatitis, nephritis, hypo-albuminemia, psychosis, hypothyroidism."

Note: This is my bold, notice these are all possible results of ignoring the need for the diet, in other words these IMHO are most likely a progression of celiac that is occuring because of the doctors ignorance and the continued poisoning of the system with gltuen while just treating the skin effects.

I had severe DH for years and developed PERMANENT nerve damage BEFORE I became a 'full blown I can now diagnose you celiac'. Your doctors are idiots. Please don't take the dapsone and please get onto the diet. There are celiac genes, I can't remember which one, that can be activated in the fetus prenatally. We strongly suspect this occured with my DS, he was clearly celiac from birth. My son went through hell as an infant and so did I when they almost took him away from me because he wasn't growing and was only 11 lbs at a year. I didn't realize how little he was till his sister was born 3 years later and was 10 lbs at birth. My son was never able to catch up and has permenent shortening of all his limbs because of celaic related growth issues. Perhaps if he had been diagnsoed before he was 20 but...... If you can't do the diet for you I hope you do it for the sake of your baby.

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jodikris Apprentice
jodikris
  • Author
Posted

Guys I am not disagreeing with anything you are saying but here is a little info: They have not gotten ONE test postive for celiac. The only reason they even tested me was that Dapsone was the only thing that seemed to cure my skin issue. WIth that being said even the dermatologist is not sure what i have is celiac BECAUSE I have had a gastric bypass and there is a study (ONE) that has found a skin condition that can occur because of this.

I had some symptoms of celiac: Frothy foul smelling stools, frequent diarreah.....but then I had an IV of iron and it all went away. HOnestly I have no idea what to believe anymore. I have seen 4 specialists and they all say I do not have celiac just a skin problem that reacts to Dapsone which they CLAIM is not proof of celiac. I have cried and cried about this. No one in my family has any allergies and both my parents have been tested for this also with negative results.

I also am not on my first pregnancy. WIth my DD I had the same rash and it was AWFUL. I started with this rash in 2003 planning my wedding. I Had my gastric surgery in 2001. At the time they all said it was stress but it went away...then I got pregnant and the rash was AWFUL. My dd was born full term healthy at 7lbs and has no health issue and no celiac (i had her tested).... This pregnancy has been easy and pain free other then the rash I just got.

I am planning to make ONE LAST attempt at a positive diagnosis based one what you guys have said. I ordered a genetic test. If that tells me I don't carry the genes for it then there is NO POSSIBLE way I have it right?

Over the years I have popped on here on and off and honestly I have never met a group of more supportive and educated people in my life. I appreciate and respect your opinions but I am sure after reading what I have been through you guys can understand why I am confused.....

At one time I thought my skin test was positive but when reading my charts MYSELF i found that the biopsy SUGGESTED celiac (one of FIVE taken) and the rest said NOT CELIAC and take my word for it I had 5 skin biopsies.....I WANT TO KNOW what is wrong. I want to know what to do to cure it....but even when I went gluten free for almost a year...the rash came back without dapsone. This makes me think I do have a skin condition that is caused by a lack of some vitamin from my gastric surgery.

I suspect I am not the only WLS patient with this problem but since the WLS is relatively new there is barely any data to support this theory the doctors have.

No it is not okay, this drug has some pretty serious adverse effects connected with it even for you:

This is from the PREMA-EU web site,

"The main adverse effects of dapsone are: 1. haemotoxicity ( e.g. methaemoglobinemia, haemolysis, agranulocytosis) 2. hypersensitvity ( e.g. dapsone hypersensitivity syndrome and erythematous reactions: dermatitis, Stevens-Johnson syndrome, toxic epidermal necrolysis) and to a lesser extent: 3. others e.g. peripheral neuropathy, hepatitis, nephritis, hypo-albuminemia, psychosis, hypothyroidism."

Note: This is my bold, notice these are all possible results of ignoring the need for the diet, in other words these IMHO are most likely a progression of celiac that is occuring because of the doctors ignorance and the continued poisoning of the system with gltuen while just treating the skin effects.

I had severe DH for years and developed PERMANENT nerve damage BEFORE I became a 'full blown I can now diagnose you celiac'. Your doctors are idiots. Please don't take the dapsone and please get onto the diet. There are celiac genes, I can't remember which one, that can be activated in the fetus prenatally. We strongly suspect this occured with my DS, he was clearly celiac from birth. My son went through hell as an infant and so did I when they almost took him away from me because he wasn't growing and was only 11 lbs at a year. I didn't realize how little he was till his sister was born 3 years later and was 10 lbs at birth. My son was never able to catch up and has permenent shortening of all his limbs because of celaic related growth issues. Perhaps if he had been diagnsoed before he was 20 but...... If you can't do the diet for you I hope you do it for the sake of your baby.

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Ursa Major Collaborator
Ursa Major
Posted

Even though you were gluten-free for a year, it is not uncommon for periodic outbreaks of DH for up to two years after going gluten-free, as it takes that long for the gliadin deposits under your skin to be gone.

And even if you don't have the official celiac disease genes, you can have celiac disease. Scientists have admitted that they likely haven't found all the celiac disease genes yet. Still most doctors claim that you can't have it if you don't have those two genes. That is simply not true.

If you really want to know if you have celiac disease, you might want to try testing with Enterolab.

But please, don't take Dapsone, that drug is simply too dangerous to take during pregnancy!

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