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Dear listmates,
Thank you to all who replied to my post with questions about DH and its
associated itch. I got a wonderful, almost overwhelming response. Of
about 40 replies, many were quite detailed and graphic. I will attempt a
summary, although the responses were quite varied as to which questions
they actually answered.
WHAT THE ITCH IS LIKE--Here is a selection of descriptions:
Like being stuck with millions of pins; like rolling in poison ivy naked
with a severe sunburn, then wrapping yourself in a wool blanket filled
with ants and fleas; like stepping in a fire ant hill and having them
crawl all over you; much worse than poison ivy; nothing more itchy; low
grade but relentless; like ants walking all over your skin and crawling
under your skin, and even when it hurts from scratching too much it
still itches; it never feels like just the skin itches--it feels like
the muscles and bones itch inside, too, and I have to dig off the
surface stuff so that I can get to the *real* itch inside; imagine your
worst mosquito bite and multiply by 1000. Etc.
Many described the feeling as burning, and some as painful. Of those who
answered whether it is hard to think of anything else, most said yes, a
couple said no, and 1 said sometimes it is hard.
Of those who answered whether it can be hard to sleep, most said yes, 1
said no, and several with mixed or more detailed answers.(Seven people
mentioned scratching in their sleep, including some who said that they
then wake up and others who stay asleep).
Of the twenty people who replied to my question of where on a scale from
1 to 10 they would rate their itch, 7 gave numbers higher than 10, 4
said it rates a 10, 8 gaves answers between 6 and 9, and one said it
varied all the way from 1 to 10 at different times.
Of those who answered whether it is constant, or comes and goes, just
over half said that the itch is constant when the outbreak is present; a
sizable minority said the itch comes and goes.
As to what triggers the itch, there was a nearly unanimous emphasis on
gluten and the importance of remaining totally gluten-free, but at least
one person seemed to be able to tolerate small amounts of gluten.
Several said that bedtime, or sleep, or relaxation triggered the itch.
Some said removing clothing was a trigger. Other triggers were alcohol,
heat, lots of sweets, and stress.
Answers to my question whether scratching makes it better, or worse: 8
said that scratching changes the itch to pain; 5 said that it doesn't
help but you have to do it anyway; some said that it helps a little, or
helps temporarily; some mentioned that scratching causes bleeding or
infection.
Most who replied to the question said it does itch before the actual
outbreak--11 to 1. Several said it does itch while healing, a couple
said it doesn't and 1 said maybe. Many indicated that new sores are
constantly appearing as old ones are healing, confusing the issue of
itching while healing, and one said it never heals. Knocking or
scratching off scabs seems not to be related to degree of itching.
Many shared other information, primarily what to do about DH. Besides
the strong and constant mention of the GF diet, at least 11 mentioned
Dapsone (or related sulphamones) as being a way of stopping the itch
relatively quickly. Most mentioned that the drug has serious
side-effects, but is worth using anyway in the short term and with
careful medical monitoring, to get relief from the itch.
Other treatments mentioned as being at least somewhat helpful included
Cortaid/other maximum-strength OTC hydrocortisone creams; prescription
Elocon; rubbing alcohol "shock;" tub soaking; wearing soft clothing;
cold cloths on the skin; hypoallergenic lotion; Neosporin Plus; Claritan
antihistamine liquid; Lanacaine; Lubriderm; Cordran brand adhesive tape;
baby oil; PrameGel; soaking in epsom salts/hydrogen peroxide bath; ice
packs; aloe vera gel.
-Jenise in Pittsburgh
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