Healing W/dapsone Diagnostic?

[theitchgirl]

Hi all,

I have been lurking on this site for months and finally decided to register and post. I have had eczema since age 12. Almost a year ago, shortly after giving birth and then going on the mirena, a hormone containing IUD, I developed a rash that looked completely different from any I had in the past. I was more blistery. It seemed to come from deep in the skin. It was extremely painful and impossible to resist scratching. Sometimes the pain felt tingling, kind of like a neurological reaction. Nothing really helped. Even Prednisone, which I had gone on many times in the past when my eczema was extreme, did not help much at all whereas it had always cleared up the eczema almost immediately.

In any event, about six months later, at the end of February, I decided to go gluten-free. My brother had been doing so for quite a while for his psoriasis and found much relief. The rash cleared up from my face within days. The rest of my body did not heal as readily, but was definitely getting better. I went to see a dermatologist shortly after starting the gluten-free diet. I told them my suspicions of gluten-free. They did the biopsy, though I don't think it was from the right area, and some bloodwork. It all came back negative. The healing continued to be slow-going, but an improvement, on the gluten-free diet alone. Three weeks ago I convinced the doctor to put me on Dapsone as I was still pretty convinced that it was DH. My skin looked 75% better within a week. The itching stopped altogether. I had read that healing on Dapsone could be considered diagnostic, but the doctor said that it is an anti-inflammatory so it is not surprising my skin would look better on it. Now I am really confused. All I know is that my life is no longer agony. I am not embarassed to bare my arms and legs in public. I feel like I want to know for sure whether or not I have DH. Has anyone gone through similar circumstances?

TIA!

[ravenwoodglass]

It sounds like your derm may not have known what they were doing with the biopsy. I don't know if the issue clearing up with Dapsone would be diagnostic but you do sound like you have DH. Please continue with the diet and don't rely on the dapsone for long term control as it has some serious side effects. Hopefully your doctor did a liver panel before prescribing it.

The following link has some easy to read and understand info.

If you do a search with dapsone and adverse reactions much more will come up.

Open Original Shared Link

[theitchgirl]

It sounds like your derm may not have known what they were doing with the biopsy. I don't know if the issue clearing up with Dapsone would be diagnostic but you do sound like you have DH. Please continue with the diet and don't rely on the dapsone for long term control as it has some serious side effects. Hopefully your doctor did a liver panel before prescribing it.

The following link has some easy to read and understand info.

If you do a search with dapsone and adverse reactions much more will come up.

Open Original Shared Link

thank you so much for the quick response. I suspected as they were taking the biopsy that it may have been to close to the lesions. Also, it was not one of the really bad areas. I am definitely continuing on the diet and hope to go back to doing that alone, but the change in my skin with dapsone was way more dramatic. I honestly feel like I am educating the derm about it myself. She has been a doctor for 60 years and said things like, "It is usually much more on the stomach" about DH. I then showed her that I did have some on my stomach. The worst has been, outer elbows, outer knees, back, shoulders,scalp and lower legs. The rash looks like so many that I've seen in the pictures. I am glad they are willing to prescribe me the dapsone, even if they don't believe that it is DH. Oh, I am doing bloodwork weekly right now for liver function.

[ravenwoodglass]

thank you so much for the quick response. I suspected as they were taking the biopsy that it may have been to close to the lesions. Also, it was not one of the really bad areas. I am definitely continuing on the diet and hope to go back to doing that alone, but the change in my skin with dapsone was way more dramatic. I honestly feel like I am educating the derm about it myself. She has been a doctor for 60 years and said things like, "It is usually much more on the stomach" about DH. I then showed her that I did have some on my stomach. The worst has been, outer elbows, outer knees, back, shoulders,scalp and lower legs. The rash looks like so many that I've seen in the pictures. I am glad they are willing to prescribe me the dapsone, even if they don't believe that it is DH. Oh, I am doing bloodwork weekly right now for liver function.

Yea your derm is clueless. DH typically presents on the legs and arms, although it can appear in other areas also. As an adult mine was the worst on my jawline, scalp and across my shoulders but I still had lesions on my arms, legs and hands too. Usually but not always it shows up on both sides of the body. I am glad they are doing the liver panels on you and also glad the med is helping so much. I was covered in DH as a child and they told my Mom I had poison ivy in blood stream to explain why I had the rash year round. There are some doctors who will prescribe dapsone but never tell folks about the diet. I'm glad you don't have one of those. Keep strict with the diet and hopefully soon you will be able to be outbreak free without the med.

[ChemistMama]

See the thread here, and my posts about testing:

celiac.com link

If you're gluten-free the blood tests will come back negative, you need to be eating gluten so the gluten antibodies can be detected.

In my opinion, stay FAR away from dapsone. Made me very sick. Cleared up the DH in 36 hours, but was totally not worth all the awful side effects. There is topical dapsone you may want to ask about, there's a lot less side effects. It's called Aczone.