Surprising Source Of Relief

[danat]

Just want to say- great forum. I've learned a lot after being diagnosed last year.

After trying tons of different products for itch relief (including Olux and other prescription lotions and creams), I've finally found an OTC product called Dermarest. It says it's for eczema, but it really wipes out DH breakouts within 48 hours. After application, there's a few minutes of itching, then it disappears, and so do the breakouts.

Regarding the prescription Olux, be careful. One of its side effects is something called central serous retinopathy (CSR). This is an eye problem, which manifests as a big floater which obstructs vision In actuality, it is caused by fluid leakage in the retina. Takes about 6 months to clear up. I had it this summer. Ophthalmologists said it happens to type A personalities, etc., but upon further investigation, I found that one of its causes is use of topical corticosteroids.

As for Dermarest lotion, hope it helps others, it works for me. Finally.

[christiking]

  danat said:

Just want to say- great forum. I've learned a lot after being diagnosed last year.

After trying tons of different products for itch relief (including Olux and other prescription lotions and creams), I've finally found an OTC product called Dermarest. It says it's for eczema, but it really wipes out DH breakouts within 48 hours. After application, there's a few minutes of itching, then it disappears, and so do the breakouts.

Regarding the prescription Olux, be careful. One of its side effects is something called central serous retinopathy (CSR). This is an eye problem, which manifests as a big floater which obstructs vision In actuality, it is caused by fluid leakage in the retina. Takes about 6 months to clear up. I had it this summer. Ophthalmologists said it happens to type A personalities, etc., but upon further investigation, I found that one of its causes is use of topical corticosteroids.

As for Dermarest lotion, hope it helps others, it works for me. Finally.

Hello -

I'm newly diagnosed with DH and celiac. I'm interested in the Dermarest that you mentioned. There are several 'flavors' offered (eczema, psoriasis, etc). Can you tell me which specific one worked for you? Thanks so much.

Christi King

[Mother of Jibril]

  danat said:

After trying tons of different products for itch relief (including Olux and other prescription lotions and creams), I've finally found an OTC product called Dermarest. It says it's for eczema, but it really wipes out DH breakouts within 48 hours. After application, there's a few minutes of itching, then it disappears, and so do the breakouts.

Were you officially diagnosed with DH through a biopsy? My understanding is that the only treatment that works is Dapsone and a gluten-free diet.

[ChemistMama]

  Mother of Jibril said:

Were you officially diagnosed with DH through a biopsy? My understanding is that the only treatment that works is Dapsone and a gluten-free diet.

My dermatologist checked my antibodies (bloodwork), and based on that and my awful sores, he diagnosed me with DH. Said a biopsy wasn't necessary based on the bloodwork (and the fact that my son is celiac). I mentioned Dapsone and the fact that I refused to take it, and he countered with (paraphrase)" I refuse to give my DH patients Dapsone. One, it masks symptoms and people think they can cheat on their gluten-free diet without thinking about how they're destroying their intestines, and two, dapsone is for leprosy. There's too many side effects from dapsone to make it truly beneficial for DH patients."

So, here I am, 10 days gluten free, and my sores are slllooowwwlly healing. Will go out and get Dermarest soon. Eucerin has a new body oil wash out also which works great in the shower. My sample from the dermatologist is almost gone, so that's another body product for the list!

[Mother of Jibril]

  ChemistMama said:

My dermatologist checked my antibodies (bloodwork), and based on that and my awful sores, he diagnosed me with DH. Said a biopsy wasn't necessary based on the bloodwork (and the fact that my son is celiac). I mentioned Dapsone and the fact that I refused to take it, and he countered with (paraphrase)" I refuse to give my DH patients Dapsone. One, it masks symptoms and people think they can cheat on their gluten-free diet without thinking about how they're destroying their intestines, and two, dapsone is for leprosy. There's too many side effects from dapsone to make it truly beneficial for DH patients."

You need a new dermatologist! There are lots of rashes that look like DH and even a few that can be caused by gluten consumption (like keratosis pilaris and dyshidrotic eczema). You really need the biopsy to make a distinction. The Dapsone thing is just ridiculous. It's like saying to someone with migraine headaches... "Well, I don't want to give you any pain medication, because it will only mask the symptoms and then you won't avoid your triggers." DH is ITCHY. Some people find that it intereferes with their sleep. It can also lead to ulcerations and scars if you can't stop yourself from scratching. It's true that Dapsone was originally for leprosy and has side effects (like just about every drug on the planet)... that's why you only take it as needed.

If it's your choice to refuse the biopsy (and treatment), then no problem... you're an adult. But IMO, you're not getting very good care from your dermatologist.

[ChemistMama]

I agree, which is why I ditched my dermatologist last month.

However, dapsone scares the living s*** out of me, and after working in the pharmaceutical industry, I am wary of any drug with that many side effects.

I asked my former dermatologist for a biopsy and his response was 'if you want to pay for one, I can do one'. Not very supportive. He's fired. Did my own gluten challenge and got much worse after eating lots of wheat products overseas.

[tarnalberry]

It's hard to say it's still DH, without the biopsy, since DH requires IgA deposits in the skin. Do they generally take a couple of months to clear up (or do you eliminate iodine from your diet already when you get them)? My understanding is that the duration of them (even on a gluten free diet) is another hallmark sign.

(It may seem odd to be questioning helpful advice, but - for my part anyway - I am just exploring whether or not it's been categorized correctly.)

[ChemistMama]

Well, I've had the lesions since April and traditional dermatology treatments didn't work (topical steroids, antihistamines, even singulair for the itching). I cook gluten-free for my celiac son, but I ate some wheat every day. Right before my europe trip, I found out that I had elevated igg and iga antibodies, which means I have some sort of celiac issue. The 'gluten challenge' was going to europe and overdosing on beer and bread, probably tripling my intake. My lesions got worse and I got new breakouts on both elbows. Everything is awfully itchy, just like DH. My lesions look just like those I see on the internet (not personal photos, the ones from the dermatology sites).

Coincidentally, we have no iodized salt in the house (I bought regular salt ages ago and never got a new 'iodized' version), and I cook with kosher salt. However, I got a cold overseas and I took a full dose of my super multi-vitamin (which contains lots of iodine and seaweed extracts), it added fuel to the fire and there were blisters galore. Took some advil three days ago which also seemed to aggravate it.

I"m only 10 days gluten free and the lesions are still there, not healing very fast at all. I"m waiting for my dermatologist referral to go through so I can get a second opinion, but based on this board and my symptoms it's likely DH. But you're right to question!!! My old dermo offerred a biopsy but that would mean having to talk to him again, which I didn't want to do because he had the bedside manner of a pathologist.

[Grrranny]

  danat said:

Just want to say- great forum. I've learned a lot after being diagnosed last year.

After trying tons of different products for itch relief (including Olux and other prescription lotions and creams), I've finally found an OTC product called Dermarest. It says it's for eczema, but it really wipes out DH breakouts within 48 hours. After application, there's a few minutes of itching, then it disappears, and so do the breakouts.

Regarding the prescription Olux, be careful. One of its side effects is something called central serous retinopathy (CSR). This is an eye problem, which manifests as a big floater which obstructs vision In actuality, it is caused by fluid leakage in the retina. Takes about 6 months to clear up. I had it this summer. Ophthalmologists said it happens to type A personalities, etc., but upon further investigation, I found that one of its causes is use of topical corticosteroids.

As for Dermarest lotion, hope it helps others, it works for me. Finally.

Dear danat,

Thank you very much, for posting this information. I am going to try it right away. I have a couple of persistent patches of DH, and nothing I've used seems to help. Perhaps this will.

Thanks again,

Grrranny

[Ames]

Danat, thank you for sharing. I was diagnosed in Oct 08 and have had a reaction since being gluten free. I know it may happen for awhile since they say it can take up to 2 years. I REFUSE to take Dapsone and my Dr. fully agreed with that since the drug is so questionable. I got rid of it once but then came again. I got rid of it again but it sure reminded me of how hard it is not to itch! FYI: I still have the red patchiness but no bumps...for now!!!

And for all you "Mother of Jibril" ppl out there who assume someone does or doesn't know if they have DH based on a post, I do. 3 confirmed biopsies, positive blood work, and positive intestine upper GI with biopsies which also confirmed Celiac.

Because my dermatologist was so great in seeing the characteristics and diagnosing me so quickly, I believe that helped me be able to get rid of it on my own. I had it only 2-3 months before dx. Thank goodness as I am sure someone who had it for years would have a lot tougher time to get it to clear up.

[kakaiba]

hi!

i have been diagnosed with DH (skin biopsy) March of 2007, since then i went into gluten-free diet(as far as i know), my derma never put me on dapsone, she gave me prednisone, gradually decreasing... i'm out of any oral meds for 1 year now.

when im on really,really strict gluten-free diet(just on food that i eat, i do not know if im using a gluten-free shampoos, and other stuff), i would only have 10 or less of my friendly little red bumps, it sure itch, but i always try not to scratch it, becoz if i do, it would get worst. i use floucinolone 05% cream with tea tree oil on my "friends"...it surely helps me...