Could This Be Dh? I Have To Ask....

[nasalady]

I was diagnosed last year with celiac disease, and then the whole family went gluten free in January. My husband never thought he had a problem with gluten until Superbowl Weekend, when he bought some beer. That was the first gluten he had ingested in weeks. Within a couple of days he broke out all over in a very painful skin condition, and he's been to the dermatologist several times. The worst patches are on knees, elbows and buttocks.

First the doctor said it was psoriasis, then he said it's a mixture of psoriasis and eczema. But in the most painful area there are a couple of spots that looked like large blisters had formed and popped, and now one of them has apparently healed but it has left this dark purple spot that's now been there for weeks. (I've heard that DH leaves purple marks after healing)

The other "popped blister" now looks like a crater the size of a quarter and is frequently raw and bleeding. The doctor has been giving my husband several different medications, and none of them seem to be helping. When he asked if it could be DH, the doc did a biopsy, but he refused to biopsy the area near the "popped blisters", instead he biopsied near a patch that looked like psoriasis. The biopsy was negative for DH.

Is it possible that my husband has psoriasis or psoriasis/eczema AND DH all at once? Of course he is now gluten free again, but it's taking FOREVER to clear up.

Any comments or suggestions are welcome!!

[nasalady]

BTW, I should say the area around the blisters has been intensely itchy, as well as painful. His knees and elbows also itched at first, but they're getting better now.

[mushroom]

Dh went gluten free at the same time as I did (of course, just for me, he said, but he also had "issues"). Then after about 8 months cheated with beer and french bread and thought he was getting away with it. Then out popped this rash on his forehead, so itchy, with blisters... He didn't get any psoriasis-looking things though, and I would certainly recognize those. So it made a believer of him, definitely DH with the telltale purple and it took forever to go away. He had never had anything remotely resembling that before.

[ang1e0251]

If he is strictly off gluten now, it should slowly clear up. It does take a long time.

[sugarsue]

Is it possible that my husband has psoriasis or psoriasis/eczema AND DH all at once?

My daughter had eczema, molluscum and what I believe was probably DH but I don't know for sure, all at once and it all cleared up after going gluten free. The eczema and mollucsum cleared up within a month but the other blisters that were the worst took longer.

[nasalady]

Thanks for the replies, everyone! It really helps to know about other people's experiences. Because of the distinctive purple mark where the one blister was, I'm pretty sure that he has DH, in addition to psoriasis. I'll just tell him to be patient!

[billmac]

A little late to this discussion but DH hits me in a way that sounds very similar to what you have described. The first indication its coming is I begin to itch across the buttocks and can feel bumps deep below the skin surface, both sides almost in a horizontal line. As it gets worse just below my knees are next followed by just below the elbows. Then the back of my head and under my chin follow.If it gets worse the back and front of my forearms as well as my abdomen and hip area get involved. It always seems to follow this sequence depending on severity. I was initially diagnosed as having eczema, then psoriasis before it was finally nailed down. Always starts the same..........itching below the skin with nothing visible ( although I can often feel a small bump within the skin) followed by fluid filled blisters of varying size which then rupture leaving an itching crater with flaking skin around it which then slowly heals. An absolute pain in the bum!

Bill

[nasalady]

A little late to this discussion but DH hits me in a way that sounds very similar to what you have described. The first indication its coming is I begin to itch across the buttocks and can feel bumps deep below the skin surface, both sides almost in a horizontal line. As it gets worse just below my knees are next followed by just below the elbows. Then the back of my head and under my chin follow.If it gets worse the back and front of my forearms as well as my abdomen and hip area get involved. It always seems to follow this sequence depending on severity. I was initially diagnosed as having eczema, then psoriasis before it was finally nailed down. Always starts the same..........itching below the skin with nothing visible ( although I can often feel a small bump within the skin) followed by fluid filled blisters of varying size which then rupture leaving an itching crater with flaking skin around it which then slowly heals. An absolute pain in the bum!

Bill

Thanks for the reply, Bill. That sounds exactly like what Paul's been going through. Just in the past couple of weeks it's become apparent that he has had multiple blisters, some large but most very tiny, and now they're healing at different rates, but all of them are leaving dark purple blotches as they heal. I told him that it just has to be DH....I can't imagine what else would do all of that and only appear when he's ingested gluten.

So today he had an appointment with his dermatologist and told him point blank that none of the meds and creams have helped at all so far. He asked for a prescription for Dapsone, because we've read that's one of the standard treatments for DH. The doc couldn't argue with the blisters and the purple spots, so he gave him the prescription.

He just took the first pill tonight and two hours later says that he's already noticed less itching!

[ChemistMama]

Nasalady,

Did your husband also get a script for bloodwork? He needs to have his bloodwork checked often if he's on Dapsone, oen of the side effects is that it can destroy your red blood cells. Ideally he should have gotten a blood test first to see if he's prone to the condition before going on the medication.

Also, read the prescribing information well and if he has any side effects he needs to drop his dosage or go off it completely. With me, no bloodwork problems but it has given me considerable muscle weakness and decreased blood flow to my hands and feet. I have a nasty patch of DH to heal up, but once it's gone, I"m off this horrible drug!

[nasalady]

Nasalady,

Did your husband also get a script for bloodwork? He needs to have his bloodwork checked often if he's on Dapsone, oen of the side effects is that it can destroy your red blood cells. Ideally he should have gotten a blood test first to see if he's prone to the condition before going on the medication.

Also, read the prescribing information well and if he has any side effects he needs to drop his dosage or go off it completely. With me, no bloodwork problems but it has given me considerable muscle weakness and decreased blood flow to my hands and feet. I have a nasty patch of DH to heal up, but once it's gone, I"m off this horrible drug!

Yes, he's had bloodwork done several times recently, so they have a proper baseline, and he's going for his first "monitoring" blood test this coming Friday. Thanks for the warnings...I hope you can get off of Dapsone soon!

JoAnn

[nasalady]

Just a quick update on my husband: Apparently the Dapsone is working, because the worst of the blisters (the giant ones located where he sits down) are actually healing now, closing up and turning purple. Interestingly, the scaly rash on his knees and elbows seems to be healing and it is turning purple as well!?! Which is weird, because it didn't look like little blisters or bumps, just red and scaly.

Anyway, this medicine is doing more for him than any of the previous meds or creams he was prescribed (one of them was Methotrexate, which is a pretty scary drug from what we read).

Does his positive response to Dapsone mean that it is definitely DH?

JoAnn

[FranDaMan]

I'm way late to this discussion but the symptoms are classic. The symmetry is uncanny with this stuff. I got it on both elbows first, then both "cheeks" and then the knees. My doctor was giddy when I showed him my elbows and knew instantly what I had. The Dapsone stopped the itch within a few hours and a day or so later the lesions were disappearing.

The side affects are frightening so be aware of those and get those blood tests done. I was on 100mg/day dose for four months then stopped (with permission of my doc). I know I was gluten-free in all my foods as we prepare it all at home. It took eleven days for the first little itchy to reappear so I know I'm almost clean but have a few more months to go before the skin beasties all subside. I took the full dose again for two days and then went to 1/2 a pill. So far so good. I had been feeling a bit weak in the arms and legs on the 100mg but not so bad on half the dose.

To answer your question though, before sophisticated tests the prescription of Dapsone followed by clearing up was proof enough that it was DH. So I'd say he reached his tipping point and it's no more cheating for him!

[nasalady]

I'm way late to this discussion but the symptoms are classic. The symmetry is uncanny with this stuff. I got it on both elbows first, then both "cheeks" and then the knees. My doctor was giddy when I showed him my elbows and knew instantly what I had. The Dapsone stopped the itch within a few hours and a day or so later the lesions were disappearing.

The side affects are frightening so be aware of those and get those blood tests done. I was on 100mg/day dose for four months then stopped (with permission of my doc). I know I was gluten-free in all my foods as we prepare it all at home. It took eleven days for the first little itchy to reappear so I know I'm almost clean but have a few more months to go before the skin beasties all subside. I took the full dose again for two days and then went to 1/2 a pill. So far so good. I had been feeling a bit weak in the arms and legs on the 100mg but not so bad on half the dose.

To answer your question though, before sophisticated tests the prescription of Dapsone followed by clearing up was proof enough that it was DH. So I'd say he reached his tipping point and it's no more cheating for him!

Thanks so much for the information....it's very helpful! He has been getting bloodwork done on a regular basis, so the doctor is watching that aspect.

You mentioned feeling weak, as have others. Does Dapsone ever make you feel like you're about to pass out?

Thanks again,

JoAnn

[FranDaMan]

Yea, lightheaded, dizzy... I asked the doc to check the B's and the D's in my bloodwork and my vitamin D level was way low (double whammy for me working nights so I don't get much sun and living in the north so there isn't much sun to begin with!). Now that I have that in check I don't feel like that anymore. Plus going to 1/2 the original dose probably helps as well. But I did notice relief when we got the D levels up.

[nasalady]

Yea, lightheaded, dizzy... I asked the doc to check the B's and the D's in my bloodwork and my vitamin D level was way low (double whammy for me working nights so I don't get much sun and living in the north so there isn't much sun to begin with!). Now that I have that in check I don't feel like that anymore. Plus going to 1/2 the original dose probably helps as well. But I did notice relief when we got the D levels up.

OK, I'll tell him to ask the doctor to test his vitamin levels....thanks!

[dh mom]

Nasalady,

Did your husband also get a script for bloodwork? He needs to have his bloodwork checked often if he's on Dapsone, oen of the side effects is that it can destroy your red blood cells. Ideally he should have gotten a blood test first to see if he's prone to the condition before going on the medication.

Also, read the prescribing information well and if he has any side effects he needs to drop his dosage or go off it completely. With me, no bloodwork problems but it has given me considerable muscle weakness and decreased blood flow to my hands and feet. I have a nasty patch of DH to heal up, but once it's gone, I"m off this horrible drug!

hi, I don't know if you looked into it, but there is such a drug called sulpha-pryadine. Our son is on it as he couldn't tolerate dapson. Dapson IS a terrible drug. Sulpha-pyridine is not avail in drugstores. your doc needs to order it and it is free as it is actually under the guidelines of a controlled test for dh. it is not a new drug. it is what was used before dapson. has far less side effects and is used all over the U.K. which is the epicenter of this disease. The creams etc don't work at all. Avoid colchicine, which makes dapson look like a walk in the park. push hard with your doc, and google the sulpha-pyridine. good luck.

[nasalady]

hi, I don't know if you looked into it, but there is such a drug called sulpha-pryadine. Our son is on it as he couldn't tolerate dapson. Dapson IS a terrible drug. Sulpha-pyridine is not avail in drugstores. your doc needs to order it and it is free as it is actually under the guidelines of a controlled test for dh. it is not a new drug. it is what was used before dapson. has far less side effects and is used all over the U.K. which is the epicenter of this disease. The creams etc don't work at all. Avoid colchicine, which makes dapson look like a walk in the park. push hard with your doc, and google the sulpha-pyridine. good luck.

Thanks dh mom! My husband hates the dapsone because it makes him feel really weak and light-headed. He plans to ask his doctor about sulphapyridine.

[ChemistMama]

nasalady,

before you switch drugs, you may want to have him taper off the dapsone for awhile. I started at 50 mg, which gave me my bad side effects. I lowered it slowly, a half a tablet at a time, reducing the dose every week until I reached one where I didn't break out. Near the end of my dapsone experience, I was on 6 mg a day, and my side effects went away and I didn't have any new breakouts. I'm off Dapsone now, yahoo!

Also, there is a topcial dapsone now, it isn't indicated for DH, but my dermo gave me some samples for my old sores and it seems to help. HAven't tried it on new breakouts...

(the topical dapsone is called Aczone, it's for acne).

[nasalady]

nasalady,

before you switch drugs, you may want to have him taper off the dapsone for awhile. I started at 50 mg, which gave me my bad side effects. I lowered it slowly, a half a tablet at a time, reducing the dose every week until I reached one where I didn't break out. Near the end of my dapsone experience, I was on 6 mg a day, and my side effects went away and I didn't have any new breakouts. I'm off Dapsone now, yahoo!

Also, there is a topcial dapsone now, it isn't indicated for DH, but my dermo gave me some samples for my old sores and it seems to help. HAven't tried it on new breakouts...

(the topical dapsone is called Aczone, it's for acne).

Thanks ChemistMama! I spoke to my husband and found out that he's been starting and stopping Dapsone at random (stopping when he feels too lightheaded and starting up again when he has a new breakout of DH). I told him about your recommendations and he says he will follow your plan of tapering down. He's badly broken out with DH on top of his feet right now and the psoriasis(??) on his hands is absolutely dreadful! His fingers are splitting and cracking and extremely painful.

It's really frustrating because he seems to have two or more awful skin conditions simultaneously, and the dermatologist just doesn't know how to deal with it!

[ang1e0251]

Wow, I was a little surprised to see he still has new breakouts after all this time. Is he getting gluten or too much iodine somewhere? It didn't take this long for me to heal.

[nasalady]

Wow, I was a little surprised to see he still has new breakouts after all this time. Is he getting gluten or too much iodine somewhere? It didn't take this long for me to heal.

Hi Angie,

No, I don't think that he's getting gluten from anywhere....he and I eat all of the same foods (I generally cook them) and I would be getting glutened too. I'm using iodine-free salt right now too.

I thought that I had read on this forum that many people had taken a very long time (months, even up to a year) to be completely break-out free....is this not the case? If I'm wrong about that, we'd better figure out if there is a source of gluten that we're not aware of.

JoAnn

[ang1e0251]

It took me about 8 weeks to clear up but during that time I didn't have new breakouts. I only get that now if strongly glutened and it usually takes a continuos glutening to do it. Like something I ingested for several consecutive days. You might want to take another look at what he's taking. Look strongly at things he's having every day like supplements, vitamins and drinks. I reacted badly to stevia in packets once. I didn't realize the packets had added wheat.

[dermotron]

I was diagnosed last year with celiac disease, and then the whole family went gluten free in January. My husband never thought he had a problem with gluten until Superbowl Weekend, when he bought some beer. That was the first gluten he had ingested in weeks. Within a couple of days he broke out all over in a very painful skin condition, and he's been to the dermatologist several times. The worst patches are on knees, elbows and buttocks.

First the doctor said it was psoriasis, then he said it's a mixture of psoriasis and eczema. But in the most painful area there are a couple of spots that looked like large blisters had formed and popped, and now one of them has apparently healed but it has left this dark purple spot that's now been there for weeks. (I've heard that DH leaves purple marks after healing)

The other "popped blister" now looks like a crater the size of a quarter and is frequently raw and bleeding. The doctor has been giving my husband several different medications, and none of them seem to be helping. When he asked if it could be DH, the doc did a biopsy, but he refused to biopsy the area near the "popped blisters", instead he biopsied near a patch that looked like psoriasis. The biopsy was negative for DH.

Is it possible that my husband has psoriasis or psoriasis/eczema AND DH all at once? Of course he is now gluten free again, but it's taking FOREVER to clear up.

Any comments or suggestions are welcome!!

Hi Nasa,

I havent read most of the other replies but my in my own experience its most definitely a yes. Beer sets DH off in me all the time. The worst case I had covered my entire body (except for my face) and was especially painful under my arms and are my groin. I've always been suseptable to skin ailments (impethiago, eczema etc) but this was by far and away the worst. Thankfully the doctor I went to knew what the condition was pretty much straight away because it was getting embarrassing as well as extremely painful. I cant really justice anything to clear it up but I would suggest buying cider instead of beer as beer(or gluten based drinks) tend to trigger DH in me pretty much everytime.

I hope it has cleared up for your husband now

Regards

D