Cycle of dermatitis herpetiformis

[pmarklesparkle]

Thank you!  I will try this.

[Hopeful1950]

Has any doctor suggested taking a round of Dapsone?  If you have dermatitis herpetiformis, dapsone will clear it fairly quickly.  It is not a drug you would want to take forever, but when all else failed my doc had me take it as a way to determine if it was dermatitis herpetiformis.  Sure enough it worked like a miracle and itch stopped and after 2 months the rash cleared.  Then I embarked on figuring out how to eat to avoid the breakouts. 

It is my understanding that once you expose to gluten, the reaction happens and antibodies are deposited in your skin.  They can blister right away or hang around for a long time and get "activated" by other things like your monthlies, pressure, stress etc....

It makes it difficult to diagnose and difficult to manage.

[Thelma Cadieux]

Thanks but I will check it out with my doctor, usually stress will trigger it,

[Scott Adams]

Keep in mind that Dapsone can have some serious side effects, so be sure to look into those before you start using it. More about that is here:

https://www.mayoclinic.org/drugs-supplements/dapsone-oral-route/description/drg-20063327

[Hopeful1950]

Oh yes.  I would never recommend taking it for an extended period of time.  When 70% of my body was covered in blistering itchy sores, an amazing doctor prescribed it diagnostically because I was unwilling to do a gluten challenge after already going strictly gluten-free in desperation after 10 years of suffering and being poo pooed by dermatologist after dermatologist. The fact that it stopped the itch and mostly cleared the rash after about 2 months was diagnostic for him.  I stopped it and have remained strictly gluten-free with very few flares since that time (over 10 years ago).  So the fact that it cleared the rash was diagnostic for me. 

 

 

[RonMc]

I use Dapsone for my dermatitis herpetiformis. Was not an issue in the beginning of diagnosis. Once I did the covid vaccine it changed and now I cannot stop using the medicine for more than 24 hours or it flares up with a vengeance. Then it takes just over two weeks for the med to get it back under control. My dermatologist was able to identify and treat it, fortunately for me I was her third patient with dermatitis herpetiformis to have a reaction post vaccine. Trial and error with other antibiotics and a ton of steroids prior to this med. Not cheap and can be problematic for liver and pancreas. 

 

[knitty kitty]

Have you tried Niacin?  The form of niacin that causes flushing, nicotinic acid (not the same as nicotine in cigarettes) helps clear the tTg 3 IgA deposits out of the skin which causes the dermatitis herpetiformis blisters.  (tTg 2 IgA is what blood tests for Celiac Disease measure).  Niacin really helps heal and improve skin health.  Niacin along with Benfotiamine (a form of thiamine that promotes intestinal healing), Vitamin C, Vitamin A, and a B Complex supplement really works.  Don't take over 500 mg total per day of flushing Niacin.  Small doses throughout the day, like with meals or snacks, helps immensely.  

Vaccinations for Covid and other diseases like the flu or RSV can cause a drop in Thiamine.  Niacin cannot function without Thiamine.  Replacing vitamins that we aren't able to absorb properly due to the malabsorption of Celiac is essential for healing.