Linear Iga Dermatosis And Dapsone

[arcdejules]

Hi All,

I came across this forum after trying to research my diagnosed condition of Linear IgA Bullose Dermatosis. I began having a burning sensation associated with blisters that began to occur after taking amoxicillian back in April 2014. The blisters occur mostly on  the palms of my hands and bottoms of feet. I did suffer through an entire body rash which became extremely itchy before beginning to take Dapsone to treat the condition. Now my flare ups are only on my hands and feet when I don't stay on top of the meds.

 

This is where I started to hear more about becoming Gluten Free. I was tested for Celiacs Disease and the tests came back negative. then I tried to be gluten free for  month just to see if it would help my flare-ups. It did not seem to make a difference. 

 

But now I am stuck taking Dapsone as the only medication which has worked to "band-aid" my disease. 

I found it interesting that many people with DH take DApsone and I would like to connect with these people.

I feel stuck and as if I have no hope of dealing directly with healing my disease to try and better it permanently.  I want to take action and I believe that trying a gluten free diet may be part of that.

 For those of you taking Dapsone, do know of any major long term side affects?  It seems there is nothing to be too worried about as long as you are not becoming anemic.  

Do you know of anyone whom has taken it while pregnant? It is classified as a category C...which means they have not enough or no evidence on wether it is safe.  We are planning on having one more child but are waiting until I see if this condition subsides within the next year. but its making me completely insane.  My dermatologist says that hopefully it will "burn itself out". But we just don't know.

If you are taking Dapsone, should you be on a gluten free diet? Or is that the case because of the DH and the effects it has on your intestinal track?

 

I feel so terrible for those of you whom have no way to relieve the blisters and itching that is associated with DH. I have a very similar situation and I can relate...though my blisters burn and even feel hot to the touch. I cannot put my hands in warm water when the blisters are inflamed because of the pain it causes.  It is almost as if I burned myself on the stove.  

 

Thank you so much for any and all information gained on this post!

 

 

[kareng]

I am no expert on DH, but I know people will want to know the answers to these questions -

Was the Celiac test a blood test or a proper skin biopsy next to a fresh lesion?

Were you gluten free for an extended time before the blood tests?

Are you currently gluten-free?

Edit - I just looked it up and it does say it presents as similar to DH and is autoimmune. So, I'm guessing, you would need a biopsy next to the blister to determine if it's DH or not? Because many people with DH seem to not have the positive blood antibodies.

[ravenwoodglass]

I have DH and have refused to take this medication. It did take much more than a month for it to resolve when I was diagnosed celiac as the antibodies take time to leave the skin. There can also be a rebound effect when the med is stopped. As Karen stated many with DH will have false negative blood tests.  There are some pretty serious side effects that can be seen with this drug. Make sure your doctor is doing regular blood work to check your liver function as Dapsone can be toxic to the liver. 

If you do a search for Dapsone and adverse reactions or side effects there is info on medical sites that will answer your question more throughly than I can. Personally I would never consider taking this while pregnant but the person to give you the best answer to that question would be your OB/GYN. 

[alsape]

I am not sure if this will help or not but I had sores/rash on parts of my body for about 5 years . After numerous dermatologists and treatments decided to go to the cleveland clinic. In one visit and an endoscopy they found out I had celiac disease. You have to continue to eat normally before the test but I was put on a strict gluten free diet and put on dapsone. My rash would get better, not cleared up, but it never went away. The iching is awful and they kept uping my dapsone. This was in June and as of right now I believe that they have it under control. They did tell me that it may take up to 6 months to a year to heal the scars all over my body. The reason it healed was they took me off the dapsone and put me on something else. The dapsone would always have my red blood count down and I was always so tired. Well now it seems to be getting better and my scratching is from an itch that you would usually get without celiac. I can not tell you the relief I have gotten now. But my opinion is that dapsone taken for a long time is not good for you and that is what the doctor told me. I am not the "normal" celiac perosn as I have NO stomach issues just the DH which sometimes I wish I had the stomach issues instead of your body itching and burning so bad... I wish you the best of luck but if I were you  would definately go gluten free and with the dapsone it should help it but if not ask or tell your doctor to try something else.

[bartfull]

Having this on your palms and your feet, plus your description of the pain makes me wonder if what you have is palmoplantar pustular psoriasis. That's what I have/had. Going gluten-free has completely cleared my hands and my feet are much better than they were although it is still there. At first it started to healand then I discovered that corn and soy also brought on new blisters. Eventually I got over the corn and soy thing but it took a few years.

 

Here are some pictures of what it looks like:

 

 

 

Then when it starts to heal the skin cracks and flakes and it looks a lot like eczema. Then it starts all over again. Slightly itchy but mostly just painful.

 

Edited to remove the links that didn't work. But google images of it and see if it matches what yours looks like.

[vincehh]

The dapsone may block the antibodies to the gluten so causing the test to show negitive.

 

I also was tested for gluten antibodies and showed negitive but I was already on a low gluten diet and the silly doc did not mention the need to eat some wheat products.

 

 

By the way I consider wheat to be a disgusting food: almost no fibre, almost no nutrition just carbohydrate that you do not need. The birth of agriculture(wheat) is also liked with a massive increase in violence.

 

Try some net searches on low fat diet versas high saturated fat low carbohydrate diet.

Also topics worth a look at: eicosanoids-omega3-omega6-inflammation and heart disease-          (these are all related)

 

 

many illnesses may be linked to the low fat high carb diet. But note in USA even the saturated fat is corrupted by the practice of feeding cattle corn, this reduces the omega 3 content and raises the omega 6 level. Cattle should only ever be fed on grass, they even need medications so they can eat corn!

 

For example I am on a low carb full saturated fat diet and last week saw doc to see results of blood tests.

Mine where better than his. Triglycerices low, HDL high and LDL low :-)

 

Food for thought

Vince

[GmaSue2]

Hi,

 

I've had D/H for 30 years now, my Doctor sent me to Stanford University as he could not diagnose what I had. After several biopsies they finally found it, it was a happy day as I was so miserable.  They prescribed Dapsone and I had to have a blood workup every 6 months. Everything was great for about 10 years, I was able to eat what I wanted without having any breakouts. Then, out of the blue I went into liver failure caused by the Dapsone, it was a long recovery and fortunately I had some great doctors who saved my life.  

 

For the last 20 years I've been totally gluten free except for some misunderstandings by restaurants or a well intentioned friend or two who promised their dish was gluten free.  My dermatologist gives me a small dose of Prednisone to clear up the blisters when I accidentally have a breakout.  Prednisone is a terrible drug also, and has a lot of bad side effects, but so far it has worked well for me.

 

I used to spend hours in the store reading labels....thank heavens they make it easier to read the product label to see if it contains gluten now!!

I'm also thankful for all of the new gluten free products, they are so good compared to the cardboard bread and buns they used to make.

 

I had a friend who said she was doing the "gluten free thing" to see if that would make her feel better...I pointed out that she was drinking a beer and it was not gluten free and neither is your favorite shooter.....Fireball.  You really, really have to do your homework to be gluten free as it is in so many products like soy sauce and even some ice cream. 

 

Ok, good luck, I hope some of this information helps.....I've enjoyed reading all of your posts and hope everyone stays well and finds what works for you. It gets easier to figure out and now there's Google to look ingredients up before you go to the store lol  

 

Take care, 

Sue