Going crazy!

[ostrich]

Disclaimer: I haven't officially been diagnosed with DH. The dermatologist thought it was contact dermatitis for ages, and gave me steroid creams that didn't work. Now she's unwilling to officially dx me with DH, but she agrees that it has "something to do with gluten".

I'm. Slowly. Going. INSANE! Arugh! I tracked down (and stomped) the source of gluten a week or so ago. But my leg is still going crazy, and my typical "solutions" (cold compresses and hydrocortizone cream) aren't working any more. I need help before I claw a hole in my leg. Has anybody else noticed that their old cures don't work after awhile? What do you do? There's got to be something that stops the itching/swelling.

I'm really, really worried about the severity of these outbreaks. Last time it was so bad it was screwing up the lymph nodes on that half of my body.
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Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[Topher28]

You probably already know about Dapsone, which many people with DH consider to be a miracle drug. I certainly believe it is, although I have stopped using it (hopefully permanently) because of the GF diet. However, many people on the GF diet still need to take some Dapsone for whatever reason.

If I were you, I would ask your doctor to prescribe you some dapsone. It is such a cheap and effective pill, although you will probably have to have periodic blood tests as a precaution. As long as the precautionary blood tests are fine, there really aren't any issues or side effects to worry about. I would certainly recommend it, because DH is itchier than anything most people will ever experience!

Good luck!

Chris
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Somebody told me that this is the place
where everything's better, everything's safe

[ostrich]

Actually, I haven't heard about Dapsone. According to Wikipedia, it's primarily used to help with leprosy. You haven't noticed any odd side effects? I'll double check with my doc, see what she thinks about it. Thanks for the tip!
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Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[aklap]

You're correct Os - it's for leprosy. It's a common drug for DH.

It would be interesting to see if the doc would give you an rx for it. My guess would be no.
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[celiacmaine-iac]

Os,
There can be serious side effects with Dapsone, so I'm wondering if your doc would even prescribe it without an official dx. From what I understand you can get relief in just a few hours with it. I've read an article somewhere about it, I'll rummage around and see if I can find the link.
If you haven't cut out iodized salt, I'd do it. DH needs iodine for the reaction. Mine has flared lately, and even though I haven't been glutened for a while, I had used some iodized salt a few times, and I think that's what's causing it.

[ostrich]

[celiacmaine-iac]

The other thing that's given me relief is Lanacaine. The label cautions about using it on large areas, but I've always found that I'll have one small area where the itching is really concentrated, and it helps for that.

This article briefly covers dapsone.
http://www.aocd.org/skin/dermatologic_diseases/dermatitis_herpeti.html

This one really covers dapsone's side effects. One of the best articles I've read on DH.
http://www.emedicine.com/derm/topic95.htm

editing to add this link:
http://www.celiac.com/articles/171/1/Canadian-Celiac-Associations-May-1998-Conference-on-Dermatitis-Herpetaformis/Page1.html


I haven't been willing to try dapsone because I also have hemochromatosis, which puts my organs at enough risk without adding a potentially toxic drug to the mix.

Steph

[forinajoy]

Sooo sorry about the going crazy with itching....the few times that I have a little bit of poison ivy it drove me crazy and it has never been real bad...so I can only imagine how something like DH will drive you crazy. ....

Sometimes, dermatologists (or any doctor for that matter) will prescribe an oral steroid for severe itching...like poison ivy...I don't know if it will help with the itching of DH or not, but you might ask...usually you only take it a few days....I have one son who is very allergic to poison ivy and periodically he needs a steroid for that and I know it helps with the itching, as well as the allergic reaction..... and my oldest daughter recently had hives and they wrote her a RX for 3 days of oral steroids and it helped with the itching and the hives...I know that DH is not exactly the same as those, but all of them itch.....
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Connie, mom to Ina, 13 y/o with CD

[ostrich]

Steph - Thanks so much for the links! The list of reactions to Dapsone is....scarily long. And doesn't sound fun. Sadly, my PCP is out of town until next week. Hopefully she'll return my call once she gets back so I can find out what she thinks.

Connie - Thanks for the ideas, but I've been on waaaay too many steroids for this. My old dermatologist had me on various steroids for years. The last type I took was supposed to be "hypoallergenic". It was like giving my leg Miracle Grow! No more steroids for me, thanks.
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Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[aklap]

[ostrich]

Must....not....make....jokes.....
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[Topher28]

Wow, this is the most action the DH forum has seen in a long time!

There's a couple of things I'd like to add. First, I know from experience that biopsies for DH are often falsely negative. An important thing (which your dermatologist may not know) is that the biopsy should be taken from healthy skin near a rash. That skin would still have the IgA deposits that they look for in an immunoflourescence test, and it would be much clearer than affected skin.

Also, I hope you're not scared of Dapsone's possible side effects. They should be taken seriously, but that is why your doctor would have you get periodic blood tests. As long as you do that, you can monitor the drug's effect on you. And especially if you're GF, you might need a very low dose, which you might not even need to take for long.

The only reason I am so pro-dapsone is that I can't stand the thought of someone suffering from DH when they don't have to. It's such a terrible thing.

Anyway, good luck!

Chris
_________________
Somebody told me that this is the place
where everything's better, everything's safe

[ostrich]

Sorry. Didn't mean to shake things up.

I didn't know that about the biopsies! I've had so many done I can't remember were most of them were. However, I know for sure the last couple of times have been right in the middle of the infected area. And it was during one of those times that they ran the test for DH. I'll bring that up with my regular doc.

I tend to be overly cautious about side effects. I think it's because I usually turn to medication as a final resort. I'll certainly go over the side effects with my doc, and see how often she'll want me to come back for blood tests.

Thanks again for all the help, people!
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Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[WandaMax]

Ostrich --- I know exactly what you mean...I fell of the deep end. The itching is aweful. What worked for me was I went completely gluten free and, for a short time, used Maximum Strength Cortizone 10...had to use it twice a day. But, I really did get some relief. Good luck!
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!!! Loving Myself and Choosing to Live !!!

[ostrich]

Welcome to the board Wanda! And thanks for the help. Have you tried keeping your skin moist? I've also found that neglecting to put on lotion makes the outbreak more horrible later.

Apparently my PCP doesn't "stock" Dapsone. However, she has several other "steroid injections" that might work next time I have a flare up. In her defense I don't think she knows that I've tried every steroid under the sun with no (or worse) results.
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of