Digging My Skin Off In A Rash Gone Wile - Dh? Your Opinion Please?

[StacieC]

Hi everyone,

About a month ago I started developing a rash just out of nowhere - woke up one morning with a rash on my right shoulder - the blisters were kind of large - almost welt like hives - and initially I thought it was Shingles. It itched and burned and was awful. I went to the Dr. that morning, and he looked at it and said yes, it was Shingles, and put me on Valtrex and gave me steroid creme. He told me to take Benadryl for the itching when I could be home, and take Clariten 24 hour when I couldn't.

The Benadryl didn't help the itch, and neither does the Clariten.

The rash morphed from large welt like blisters to smaller almost pimple like blisters and then sort of faded for a while from that area, but meanwhile, it appeared on my right leg below my knee - again, circular, large welt like almost hive looking things that itched and burned like crazy - and then they sort of morphed into pimple looking things. They hurt too bad to scratch initially and I continued to take the valtrex and use the steroid cream. Then, suddenly, all "heck" broke loose. It was on the top of my right foot, on my toes, then on the top and arch on my left foot, then up my left leg on the front of it below my knee - it appeared to be traveling in patches. As it spread, I would feel a burning sensation hours before any marks would appear and then sure enough, the large round spots would pop out. Now, a month later, I've had it on all of the areas I mentioned above, plus the back of my left lower leg, on the tops of both feet and on the tops of all toes, on the tops of many of my fingers, on the pads of several of my fingers, and even on the "heels" of one of my hands, it's formed particularly bad at my elbows at both arms and spread down the outer aspect (the part of the arm that woudl lay like up against a table or something) of both arms from just above the elbow all the way down the pinky binger and up the right leg to the buttock. It still stings and burns before new bumps pop out, and the still come out round, but they don't seem as if they come out as large now - they are still circular, but what is all over me now is an almost course pimply feeling rash that itches so bad I just scratch and dig all the time. I have even scratched patches of skin off my feet while I slept

My family Dr. looked at it, said essentially he had no idea, and referred me to a Derm, who I don't see until November 5 - I really feel like I just can't make it until then - this itching is so bad I'm getting desperate - I want to scream and cry when it gets at it's worst - there is *no* soothing the itching it - no benadryl, no clariten, no aveeno, no steroid cream, no anti-itch cream that works - nothing.

No one in my family has this rash. No one at work has this rash - leading me to think not contagious. One Dr. (my neuro) looked at it and declared it was Impetigo (he's kind of a jerk) but my family Dr. said absolutely not.

I have never had one blister on my face or neck - none on my head, my ears, etc. I have had itchy welt like red areas on my stomach and my breasts, but they did not form into the pimple like things - they just itched like crazy for days and then went away.

Does this sound like it could be DH to you? If not, got any other ideas? I could have DH take pictures, but don't know where to post them to show you. The areas on my legs are healing up good now, but they still itch despite the marks going away. My feet itch like crazy still. It does seem worse when I get hot. I have not yet attempted Gluten Free - I read that I should wait and let the tests confirm it before making diet changes so as not to alter the tests ...

Opinions please?

Thanks in advance,

Stacie

[ang1e0251]

It could be DH, that's was what finally led me to DX myself. I could not handle the pain and itch any longer. As soon as it came to my attention that it could be gluten, I went gluten-free and lo and behold, that was the answer to so many of my problems! If you want to wait for testing then keep eating gluten, if you choose to start the diet just go for it! That's a personal choice that only you can make. Let us know how it turns out for you.

[ChemistMama]

1. If you have DH, you can be sensitive to NSAIDS (like ibuprofen or naproxen) and iodine. Before I was diagnosed I had eaten lots of shellfish and by blisters got worse. You could also try taking 2-3 advil to see if you have a reaction.

2. Go to the main DH forum page here and click on the "iodine patch test" thread, it's how they used to diagnose DH although it's not 100% definitive.

3. Do your welts 'weep', that is, do they ooze a yellow fluid? If you have some that have healed, are the scars purple? Those are two other signs that it is DH.

Belive me, I feel your pain!

[Glamour]

I feel bad for you, and I have that crazy itch too. Definitely get off the gluten, why prolong the misery if it might help.

As for the Dr - you might have secondary issues with DH like Eczema, Ipetigo, or Staph. Keep very clean, but no scrubbing. It is aggravating when the DRs say you just have dry skin. My skin is not that dry except where the rash is.

Mine gets worse when I get hot, and its hard to control body temperature while sleeping. When I get into bed I am cold but an hour after I am sleeping with a light blanket and sheet, I am burning up and itching. I hate it when my body is cold but my skin is hot. Sometimes just the way clothes touch my body makes me itch. I stay naked as long as possible after a bath.

I have the purple/red scars all over. It takes a long time before an area heals, months. The rash moves around and eventually back to the original starting places. What is weird is sometimes the scars are almost gone and then a few hours later they are as bright as can be. The other thing is I have lumps and knots under each sore and they hurt. There is a cycle of the sore weeping, drying, crusting, scabing and you think it is almost gone, and it starts all over.

I had a terrible attack for the last few days. I am about to go coffee and dairy free. I am trying to eliminate things by category so I will know what is bothering me.

The iodine patch did not work for me. I had a neck/scalp biopsy and they called it Eczema/Psoriasis. I doubt that they tested further for DH back then.

The worst part of this besides the misery of the itch (and I can't sit on my butt for very long), is that friends and relatives have no idea....They will say, I have eczema and show a minor little dry patch.

I say no, I insanely ITCH - down into the muscle, almost the bone. During an attack, it is even hard to breathe. I have only shown one person my butt and they were horrified. I did not have the rash here when I saw a Dr.

[StacieC]

Ahh - Ibuprofen. I just took some - I'm achy tonight - I have a headache - feel like maybe I'm coming down with something. I get sick a lot though, so that's no surprise.

I did read about the Iodine patch test, and I couldn't find the iodine tincture. In fact, when I went to the drug store, the closest thing I could come up with was Povidone Iodine. I thought, "what the heck" and tried it anyway - it's 10% solution (I believe 1% iodine) and after approximately 12 hours covered by a bandaid, I have a 1 inch by inch red area still 2 days later. I know that's nothing definitive - it could be allergic dermatitis from the chemicals in the povidone iidone, but I do find it very interesting regardless.

My welts will feel wet, but I have never actually seen anything come out of them - they do scab up, but it's usually a dark bloody like scab from where I have dug the skin and the blister and everything else off from my uncontrollable scratching. The ones that have actually healed (the few that there are) have almost a bruised appearance so yeah, I guess you could say they are purple. The scabs are dark almost black, but again, it's from the blood that comes out of them when I dig them and scratch them. Very few remain without being scratched. It's such an uncontrollable urge I just can't help it.

I was reading somewhere about the symmetry of DH, and as I gaze at my feet, I notice that there's a blister on my big toe on each foot, there's a blister on my second toe on each foot, there's a blister on my third toe on each foot - all in almost the same spot on each side. Also, on my feet - there are blisters that match in location. The breakouts on my legs and arms match, and though there are too many blisters to match on my arms, there are some in similar locations as well.

Very curious.

The good news is that the Dermatologist had a cancellation and I get in on Thursday at 9:15. Maybe there is light at the end of the tunnel.

Fingers crossed.

Thanks for your reply.

Stacie

  ChemistMama said:

1. If you have DH, you can be sensitive to NSAIDS (like ibuprofen or naproxen) and iodine. Before I was diagnosed I had eaten lots of shellfish and by blisters got worse. You could also try taking 2-3 advil to see if you have a reaction.

2. Go to the main DH forum page here and click on the "iodine patch test" thread, it's how they used to diagnose DH although it's not 100% definitive.

3. Do your welts 'weep', that is, do they ooze a yellow fluid? If you have some that have healed, are the scars purple? Those are two other signs that it is DH.

Belive me, I feel your pain!

[StacieC]

Hi Glamour,

It sounds like we have a similar rash. I did finally get worked into the Derm - he had a cancellation so I get in on Thursday morning - thank goodness. I almost cried when the scheduler told me I could get in earlier.

I wash very gently - always with the same soap, in case they try to throw the allergy thing out - I haven't changed soaps in years - and I am always covering myself in lotion - I work as a nurse, and so my skin does take a beating. Really it's not very dry but this rash is killing it. I read somewhere about Sarna cream, and I bought some of that a day or two ago - it burns like the dickens when it goes on, but it does feel better for just a little while once the burn stops.

So, the way you describe it sounds just like mine - have you been to the Dr and been told it's eczema? I think I will scream if that's the case - I'm 37 and have NEVER had trouble with my skin until just out of the blue one day - in fact, I can tell you the date - 9/21 - I woke up with this rash on my shoulder and thought it was shingles because of the way it hurt and itched and burned. Big mistake for sure, because if this is shingles, it's shingles on steroids - LOL.

If the Derm won't do the testing, I'm tempted to print out info and take it to my GP - he's a pretty good Doc - he's just not knowledgeable on rashes - I think he'll listen to me if I have my "ducks in a row." I know what you mean about going "gluten free" but I"m kind of a "get to the root of things" kind of person and feel like the reason should be found so I don't stumble into it again - so what if it's not gluten sensitivity, and by coincidence the rash goes away, then when I do my international study portion of my BS in Europe I stumble into it again, 10,000 miles from home broke out into a miserable rash and possiblly in a country where I don't speak the language. So, I'll suffer a little longer for the blood tests or the biopsy or whatever it is in the hopes that maybe we can get an answer and some medication - and I can get some releif - and then, if there is no answer, next week I'll "suck it up" and go gluten free - though I'll do it tearfully because of so many of the things I love to eat will be gone.

By the way, I totally understand what you mean about family not understanding. I itch and dig and try not to whine and complain, and my husband will show me three little bumps on his leg and say he's got it too (sigh) and then the next day the bumps are gone. He really doesn't get it at all.

Ok, enough whining. I'm itchy, time for more Sarna cream and bed if I can sleep. Two more days and maybe I'll have answers more than just what I think I know - though I'm pretty sure I know what I think I know - make sense?

Ugggh.

Stacie

  Glamour said:

I feel bad for you, and I have that crazy itch too. Definitely get off the gluten, why prolong the misery if it might help.

As for the Dr - you might have secondary issues with DH like Eczema, Ipetigo, or Staph. Keep very clean, but no scrubbing. It is aggravating when the DRs say you just have dry skin. My skin is not that dry except where the rash is.

Mine gets worse when I get hot, and its hard to control body temperature while sleeping. When I get into bed I am cold but an hour after I am sleeping with a light blanket and sheet, I am burning up and itching. I hate it when my body is cold but my skin is hot. Sometimes just the way clothes touch my body makes me itch. I stay naked as long as possible after a bath.

I have the purple/red scars all over. It takes a long time before an area heals, months. The rash moves around and eventually back to the original starting places. What is weird is sometimes the scars are almost gone and then a few hours later they are as bright as can be. The other thing is I have lumps and knots under each sore and they hurt. There is a cycle of the sore weeping, drying, crusting, scabing and you think it is almost gone, and it starts all over.

I had a terrible attack for the last few days. I am about to go coffee and dairy free. I am trying to eliminate things by category so I will know what is bothering me.

The iodine patch did not work for me. I had a neck/scalp biopsy and they called it Eczema/Psoriasis. I doubt that they tested further for DH back then.

The worst part of this besides the misery of the itch (and I can't sit on my butt for very long), is that friends and relatives have no idea....They will say, I have eczema and show a minor little dry patch.

I say no, I insanely ITCH - down into the muscle, almost the bone. During an attack, it is even hard to breathe. I have only shown one person my butt and they were horrified. I did not have the rash here when I saw a Dr.

[chiroptera]

I just wanted to mention that they only things that helped my daughter with the itching where keeping her loaded up, constantly, with cornstarch rubbed into her skin, if you can have corn.............then right after a bath we would put CeraVe lotion on; it sinks in right away, then more cornstarch.

Benadryl does absolutely nothing for her itching, btw............people have NO idea how severely you itch...........she quite literally would tear her skin off..

it is very awful and I hope you feel better SOON!