Super Itchy Rash Going On 4 Years Now

[Chefwife8]

I had a biopsy about 2 years ago it was inconclusive for DH. The dermatologist did biopsy because as soon as he saw my rash he said it looked like dh. It has gotten worse over the years. I have it on my arms, waist, breast, eyes, hands, wrists always on both sides of my body. The skin usually starts to itch before rash even apears. I take about 50mg of benadryl a night just so I can sleep. Every evening the itch is so bad I feel like ripping my skin off. It always wakes me even with the benadryl.

Going to new Dermatologist hopefully soon hoping to have another biopsy done how can I ensure it is done correctly

[squirmingitch]

Are you eating gluten free? If so then you need to go back to eating gluten for at least 2 months. No oral steroids or steroid shots for 2 months before the dh skin biopsy. 

 

Print these pages out & take them with you to the derm.

Open Original Shared Link

 

Open Original Shared Link

[mitchgam]

I had a biopsy about 2 years ago it was inconclusive for DH. The dermatologist did biopsy because as soon as he saw my rash he said it looked like dh. It has gotten worse over the years. I have it on my arms, waist, breast, eyes, hands, wrists always on both sides of my body. The skin usually starts to itch before rash even apears. I take about 50mg of benadryl a night just so I can sleep. Every evening the itch is so bad I feel like ripping my skin off. It always wakes me even with the benadryl.

Going to new Dermatologist hopefully soon hoping to have another biopsy done how can I ensure it is done correctly

Welcome to the wonderful world of DH, were all the Doctors can do is guess what you have half the time.

First deal with the rash, which has possibly become a systemic histime reaction. Got to a doctor. Take a course (or 2) of steroids to end the rash. Then embark on a lifetime of strict gluten free eating.

[squirmingitch]

Once again mitchgam, dh is not & does not cause a systemic histamine reaction. An allergy is a histaminic reaction dh is not.

[mitchgam]

Yes, of course you are right and all of the doctors I have gone to are wrong.

Or it is ONLY me that has that problem.

[bartfull]

Yes, Mitchgam, she IS right.  Perhaps all of them WERE wrong. Or perhaps you have MISUNDERSTOOD what all of the doctors you have gone to said. You have been repeatedly shown the science and research from reputable sources on this topic, yet you still persist in repeating this FALSE idea.  

 

From everything you have said in previous posts, you do NOT have DH. What you have is an ALLERGY. They are totally different things.

[mitchgam]

So, please let people like that suffer for years and years, not taking the short course of steroids necessary to stop the reaction.

The fact that I refused to get into a battle of medical studies with you to prove my point, makes you right.

 

My advise stands, take the steroids, then the next time you feel the symptoms, take Dapsone.

If Dapsone stops the reaction cold, then you have DH.

If it doesn't then you don't.

 

That is exactly what I have been told by multiple doctors.

 

OR  you can check into a hospital and eat bread for a week then get the blood test.

[bartfull]

Chefwife8, please, listen to SquirmingItch. She knows what she's talking about. Our "friend" Mitchgam is totally mistaken and unfortunately he holds on tight to his false beliefs and refuses to listen to reason.

 

If you have any doubts about that, read his posts here:

https://www.celiac.com/gluten-free/index.php?app=core&module=search&do=user_activity&mid=64593

Pay particular attention to the thread titled "Diagnosing DH rash" and the one "DH sometimes looks like poison ivy". Mitchgam has an allergy to wheat that he insists on calling DH. He is wrong.

[mitchgam]

Yes, as do the 3 GP and one Dermatologist I have been to, Two other GP's and 1 allergist didn't have a clue.

 

But, go ahead and suffer with the itch for as long as you can take it, knowing that there is relief out there.

[Chefwife8]

Would like to say that I have done the steroids and unless I am on a super high dose it does nothing for my rash. It has gotten worse in the past few months. Gonna see the dermatologist in a few months now knowing I need to be steroid free Dr. Put me on low dose thinking it might help which it hasnt. The worst of it is in the evening not only does it itch but my skin burns and tingles does this happen to those who have dh?

[mitchgam]

Low dosages do nothing for me either.

I take the high dosage 5 pills the first day 4 the next and so on. Sometimes having to do it twice, before the attack ends a few days latter. 

 

If I catch it early enough Daphone works wonders, but once it continues a few days I switch

[Chefwife8]

Even high dose as soon as I stop the rash comes right back. I don't want to take Dapsone after what dr told me about it I won't take it

[mitchgam]

Do you take the pills in the decreasing amounts 5 pills the first day and 4 the second and so on? and then repeat? or just one shot by the doctor (I have tired both ways and find the pills more effective).

 

Dapsone only seems to work for me if I take it as soon as i feel the attack coming on, it stops the DH attack immediately, but if I am not quick enough, my body kicks in with a histamine reaction to the DH attack, that has nothing to do with DH. (the difference between the two types of reactions has been noted by my doctors).

[mitchgam]

Once again mitchgam, dh is not & does not cause a systemic histamine reaction. An allergy is a histaminic reaction dh is not.

I have DH

BUT, I also seem to have a histamine reaction to the DH reaction.

(I am sure there is a better way of phrasing it but thats how it has been explained to me)

 

If I eat anything (including Oats and Barley) that contains gluten within minutes I know it, I feel adrenaline and itchy. If I take 2-4 Daphsone pills it ends within minutes. (and yes I need to stay on them for a few days) That according to 2 different doctors is the differential. If I had a wheat allergy as you allege Daphsone would not work. The fact it does is the proof. (Rice Crispies do not have wheat but set me off)

 

BUT, I also have an "allergy" to the DH reaction. If it goes too far, I swell up, have trouble breathing etc. That is NOT a DH reaction, but a Histamine reaction.

Even the my skin looks different from one to the other.

 

I have lived with this for over 20 years.

It might not be the typical reaction and I might not be using the "correct" medical terms, but unless you yourself are a doctor with a speciality in this area, please stop assuming  you are.

[squirmingitch]

Would like to say that I have done the steroids and unless I am on a super high dose it does nothing for my rash. It has gotten worse in the past few months. Gonna see the dermatologist in a few months now knowing I need to be steroid free Dr. Put me on low dose thinking it might help which it hasnt. The worst of it is in the evening not only does it itch but my skin burns and tingles does this happen to those who have dh?

I have done super duper steroids, the kind that have me bouncing off the walls @ 3am feeling like I could single handedly build a house from the footer up in one night. They got rid of the rash and the very moment I stopped them the rash came back with a vengeance like you wouldn't believe. I went through several cycles of this (all prior to knowing it was dh) and each time the result was the same. I had to ever sooooooo slowly ramp down the dosage so it wouldn't give me the rebound - it still did in the end but it was greatly reduced. 

Yes, the skin burning and tingling is typical. It gets worse at night or begins getting worse late afternoon building to the nighttime torture ritual. Sounds odd to say that it gets worse at night b/c it will drive you out of you ever loving mind during the day but get worse at night it does -- so badly that you can not sleep. Sheer, utter exhaustion is the only sleep I got for well over a year  -- just snatches of an hour here, two hours there.

{{{{{{HUGS}}}}}}}

[Chefwife8]

I have had shots and the decreased dose of steroid. As soon as I am done comes right back

[squirmingitch]

I have had shots and the decreased dose of steroid. As soon as I am done comes right back

Oh sure it does! Maybe I didn't make myself clear. When I quit the steroid pills -- even getting off them so slowly --- the rash came back. What I was trying to describe was that there is a rebound to the rash that many of us experience from the steroids.

Yes, I was totally off the steroids and still had rash for --- well, I still have rash 3 years later. 4 billion times better than it was but I still get annoyances. I go for hours & hours w/o an itch, sometimes a day or two. I'm getting better all the time. One day there will be NO itchies. Many, many with dh do not take years - some only months.

[Chefwife8]

Yes, seemed like every time I started the steroids again as soon as I was done rash came back and was usually worse than when it started. Is there a reason it's worse at night? Also does the dh rash burn and tingle?

[squirmingitch]

Yes, seemed like every time I started the steroids again as soon as I was done rash came back and was usually worse than when it started. Is there a reason it's worse at night? Also does the dh rash burn and tingle?

I don't know the reason it's worse at night but we all report it is. I've never seen any medical information that even makes a guess as to why it's worse at night. Some people with dh have speculated that it's because our minds are not busy. We aren't working & keeping our minds occupied which allows us to dwell on the rash more. In a way it makes sense. I seem to have noticed that when i get super busy I don't notice the rash as much -- I mean, I don't pay as much attention to it???? But that is now that the rash for me is so much less. When my rash was in it's heyday it didn't matter what I did or how busy or occupied my mind was the rash was filling my mind to overflowing.

Yes, I stated the rash burns & tingles & stings as well as itching like the very devil. It burns like you stuck a lit cigarette on you or got the worst sunburn in the history of man.

[bartfull]

I have noticed that any itch, whether it is from a rash, poison ivy, a bug bite, or even dry skin, is always worse at night. For what it's worth, the third paragraph in this article may explain why: Open Original Shared Link

[squirmingitch]

I have noticed that any itch, whether it is from a rash, poison ivy, a bug bite, or even dry skin, is always worse at night. For what it's worth, the third paragraph in this article may explain why: Open Original Shared Link

Interesting Barty! Thanks for that! It makes sense. 

[Chefwife8]

Yes, seemed like every time I started the steroids again as soon as I was done rash came back and was usually worse than when it started. Is there a reason it's worse at night? Also does the dh rash burn and tingle?

[Chefwife8]

Sorry not sure why that posted again

[squirmingitch]

No problem. Don't worry about it.

[mitchgam]

I know this might sound silly being on a Celiac/DH forum, but you are on a strict gluten free diet, right?

You have looked into and stopped eating all foods that contain gluten, meaning things like regular soy source, gum, corn flakes, blue cheese and so on?

Even some products labeled gluten free are not really, you have to still read each label.

 

Nothing other then daily high doses of Dapsone will actually stop the reaction and Dapsone has its own problems, although not really as bad as some doctors make it out to be.