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Possible Dermatitis Herpetiformis?

Tate

By Tate
in Dermatitis Herpetiformis

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Tate Newbie
Tate
Posted

Hello everyone,

I stumbled upon this site in my quest to find out what has been going on with my skin for the last three months and I hope that someone out there can help me.

Three months ago, I came down with a really bad case of pink eye in my right eye. I got the pink eye cleared up after two months of steroid eye drops. A week after the pink eye appeared, a really red bumpy rash appeared in the right side of my neck. I have been to my dermatologist twice and nothing she has done has cured this rash. She did two fungal tests and they were both negative. She said she has no idea what it is.

She gave me Elidel the first time because she thought it was eczema. I just turned 25 and I have never had eczema before in my entire life. The Elidel made the rash worse. I went back and she gave me a steroid, 1.0 mg triamcinolone acetonide ointment. It made the itching stop for about 2 weeks, but now the rash has stopped responding and is worse than ever.

This rash itches like nothing I could ever describe to somebody. I try not to scratch during the day but I wake up almost every night digging into this unsightly rash. This rash is very strange. It does not spread anywhere else but the right side of my neck. I will get these sore bump type things filled with "stuff" in them. Once these rupture, they turn a darker red and it takes forever for them to disappear. Meanwhile, more "bump" looking things appear and fill with fluid. This rash responds to nothing- cold compresses, Benadryl, etc. The itch is always there.

I have never been diagnosed with celiac disease. I really don't have the classic stomach issues that I have read about with celiac disease. I am just hoping that somebody out there can look at the picture I am attaching and tell me if it looks like their dermatitis herpetiformis. I am desperate for answers and relief from the itch. I am attaching a picture of my neck. If anyone has any advice, I thank you all in advance..

..

b64v0k.webp

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sisterlynr Explorer
sisterlynr
Posted

This looks like my breakout of DH.   Some may say it has to be on both sides of your body and it usually does present that way.  I do have lesions on both sides of legs, knees, buttocks, arms, etc. except on the ones that are on the soles of my feet.

 

Have you mentioned Celiac to your Dermatologist?  She would need to biopsy an area next to a lesion and have it studied with immunifloresence under microscope for protein antibodies.  There are also blood test that a specific to Celiac but mine were negative.  If you have a biopsy you need to be consuming gluten.  Have you tried not eating gluten to see if the rash clears?  That is how I was diagnosed. . . doctor ordered Dapsone and gluten-free diet and within 72 hours, I had relief from the symptoms and the rash started healing.

 

 There is a topical Dapsone which by all accounts I've read, doesn't have as many negative possibilities.  I do not have a problem with the drug, being tested every month by my doctor.  I'm sure you will be receiving more information from others on the site.  I was browsing through and saw you hadn't received a reply.   I'm quite the newbie here but sure can relate to the rash . . . 

pricklypear1971 Community Regular
pricklypear1971
Posted

Yep, it looks like it could be dh. But to be honest - lots of rashes look like they could be dh.

You have been on steroids - that could give you false negatives. If steroids aren't working then stop them, ask for a full Celiac blood panel and skin biopsy. Ensure your derm knows how to biopsy for it. Then, try a gluten-free and low iodine diet and see what happens.

Just because the rash isn't bilateral NOW, doesn't mean it won't be tomorrow. Be warned. Dh can start off looking like other rashes - then whammo. You don't want to get to whammo.

squirmingitch Veteran
squirmingitch
Posted

I agree with what Lyn & Prickly said. If you want to get tested then DO NOT stop eating gluten until all testing is completed & you have the results back. DO NOT go gluten light either. 

Celiacs with dh tend not to have the GI symptoms that regular celiacs have or we have them but only mildly. That is not in every case but most of us so it doesn't matter that you don't have the classic stomach issues of celiac disease. Even so; celiacs with dh still get the damage to the villi & all the other maladies associated with celiac disease. In fact, with dh; our risk of lymphoma is a touch higher than celiacs who do not have dh.

 

Here are some links for you:

 

A dx of dh is ALL you need. No GI biopsy or bloodwork needed.
 
Open Original Shared Link
 
Open Original Shared Link
 

 

 

Interesting Reading on DH:
 
 
 
Descriptions of DH Types:
 
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
 
DH Photobank:
 
 
 
 
Newbie 101 for celiacs
 
sisterlynr Explorer
sisterlynr
Posted

I have researching and made myself nervous today.  I had NH Lymphoma in 2008, treated by chemo.  When I first developed this rash 2 of my doctors thought it could be NH Lymphoma rash.  With a good reaction to Dapsone and eating gluten-free they determined it was DH.  Now I'm questioning this . . . I'm breaking out with new lesions even though taking Dapsone and look what I found today.  Now I hesitate to even say someone's rash looks like DH. 

 

 

Signs and symptoms of skin lymphoma

Lymphomas of the skin can be seen and felt. They can appear as:

  • Papules (small, pimple-like lesions)
  • Patches (flat lesions)
  • Plaques (thick, raised or lowered lesions)
  • Nodules or tumors (larger lumps or bumps under the skin)

The lesions are often itchy, scaly, and red to purple in color. The lymphoma might show up as more than one type of lesion and on different parts of the skin (often in areas not exposed to the sun). Some skin lymphomas appear as a rash over some or most of the body (known as erythroderma). Sometimes larger lesions may break open (ulcerate).

Along with skin problems, in rare cases lymphoma of the skin can cause general symptoms, such as:

  • Unexplained weight loss
  • Fever
  • Profuse sweating (enough to soak clothing), particularly at night
  • Severe itchiness

 

I have had each of the symptoms above since February of 2012.  In reading on line, this sometimes takes 6 years to diagnose because so many other rashes are similar.  I emailed a member today that had been on Dapsone for many years.  I need a few questions answered.  What if the doctors are wrong?  What if it isn't DH?    

pricklypear1971 Community Regular
pricklypear1971
Posted

I have researching and made myself nervous today. I had NH Lymphoma in 2008, treated by chemo. When I first developed this rash 2 of my doctors thought it could be NH Lymphoma rash. With a good reaction to Dapsone and eating gluten-free they determined it was DH. Now I'm questioning this . . . I'm breaking out with new lesions even though taking Dapsone and look what I found today. Now I hesitate to even say someone's rash looks like DH.

Signs and symptoms of skin lymphoma

Lymphomas of the skin can be seen and felt. They can appear as:

  • Papules (small, pimple-like lesions)
  • Patches (flat lesions)
  • Plaques (thick, raised or lowered lesions)
  • Nodules or tumors (larger lumps or bumps under the skin)

The lesions are often itchy, scaly, and red to purple in color. The lymphoma might show up as more than one type of lesion and on different parts of the skin (often in areas not exposed to the sun). Some skin lymphomas appear as a rash over some or most of the body (known as erythroderma). Sometimes larger lesions may break open (ulcerate).

Along with skin problems, in rare cases lymphoma of the skin can cause general symptoms, such as:

  • Unexplained weight loss
  • Fever
  • Profuse sweating (enough to soak clothing), particularly at night
  • Severe itchiness

I have had each of the symptoms above since February of 2012. In reading on line, this sometimes takes 6 years to diagnose because so many other rashes are similar. I emailed a member today that had been on Dapsone for many years. I need a few questions answered. What if the doctors are wrong? What if it isn't DH?

First, DH is notoriously a beast. Many people experience breakouts even on dapsone - it can take years for the antibodies to clear out. You may try reducing your iodine intake and see if that helps clear the rash.

Second, ask your doctors to run whatever tests they need to run for you to know if the rash is lymphoma related.

I'm sorry, I know this is frightening.

tinpins Rookie
tinpins
Posted

I don't know enough about this to be able to comment intelligently other than to agree with "prickly" about the iodine intake and the tests ... this is a frightening journey to be on when there are so many unknowns. I'm thankful, as I'm sure you are, to have the support and insights of this forum. Please share your findings with us all Lyn.  ((( hugs to you )))

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squirmingitch Veteran
squirmingitch
Posted

Breathe, just breathe. Go to the doc like Prickly & tinpins say & get tested for the Lymphoma but don't freak out & let your mind take you to scary places. Prickly is right --- this stuff is a beast & if you look at the med texts it  states that Dapsone won't resolve ALL of the rash issues but makes it livable (or so they think but they don't have it!).

 

(((((hugs )))))) and yes, let us know.

  • 2 weeks later...
sisterlynr Explorer
sisterlynr
Posted

I stopped taking Dapsone.  The 'chicken skin' itchy rash has cleared up.  I still have some 'bumps' under the skin (not blisters with liquid) on both of my sides.  The breakout on the outside of my thighs are drying and not bleeding.  The 3 " open wounds (from scratching) has scabbed over and not oozing.

 

I read on here that someone used rubbing alcohol (which I had done before) I started using a clean wash cloth, rinsing it with cold water and applying the alcohol to the cloth.  When I begin to feel the itch, I go to the bath room and apply the alcohol.  

 

I stopped applying Vani-creme (found this product) Baby oil, Argan oil, Vit E oil.  Nothing but rubbing alcohol.  I started drinking a meal replacement that is gluten-free and suitable for lactose intolerance people and diabetics.  I cried for a few days and then it hit me . . . not giving up and have my determination back!  Still planning to check with my doctor and sure hope not taking Dapsone, comes back and kicks me!  

squirmingitch Veteran
squirmingitch
Posted

That's another reason I think ppl should be hesitant to take Dapsone ~~~ it clearly states that the Dapsone itself can cause a rash as a side effect. How is one supposed to know what's Dapsone rash, dh rash or "other" rash when taking Dapsone. And Lord knows we DON'T need any more rash than the dh!!!!!!!!!!!!!!!!!!!!!!!

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