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Help For The Itching, Stinging, Burning, Pain Of Dh


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36 replies to this topic

#1 squirmingitch

 
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Posted 12 September 2012 - 03:22 PM

I thought we should have a thread devoted to this subject. That way we can link to it for newbies instead of typing it all out again each & every time. I'm going to list the things I can remember people saying helped them. You all can expand on the thoughts/techniques.

Hot water irritates dh so shower or bathe with the coolest water you can stand.

Witch hazel helps to cool off dh especially after the shower or bath.

Ice packs on dh.

Vanicream is gluten-free & moisturizes, especially when the crusts/scabs are rampant. If you put Vanicream in the fridge it really helps cool when it goes on. Cromolyn cream is a combo of Vanicream & Nasalcrom which helps with the itch, sting, burn, pain of dh. Recipe is here:
http://www.chronichi...omolyncream.htm

Walgreens pain relieving ointment works great; contains 20% benzocaine. Orajel also contains same ingredient.

CVS Calamine Plus itch relief (pink).

Benadryl Extra Strength Itch Stopping Gel.

If you have spots that are isolated from others enough; you can put vaseline or neosporin on the spot & cover tightly with a band aid. It will itch, sting or burn intermittently for a day or two & then stop as long as you keep the band aid on it.

Sun seems to irritate dh so avoid getting sun on those areas.

Sweat or getting overheated makes the dh rage so try not to get it fired up.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


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#2 ciamarie

 
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Posted 12 September 2012 - 03:46 PM

Good idea for this thread, squirming

Ok, I'll add mine. On the back of my knees I used some body lotion with tea tree oil that took away the itch long enough for me to get to sleep some nights. If I had known about the vanicream or others, I might have tried that instead.

Also, when I had it on my face several years ago, I thought it was some sort of adult acne, and using proactive solution did clear it up enough to not look like a freak show. :unsure: Then I used calamine lotion in the evenings to help relieve some of the itch.
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Gluten-free since the end of October 2011

#3 squirmingitch

 
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Posted 12 September 2012 - 04:01 PM

This is exactly what we need ciamarie!
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#4 pricklypear1971

 
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Posted 12 September 2012 - 06:11 PM

Topical corticosteroids brought mine down - reduced swelling and seeping but I think it interfered with healing. So, use at your own risk.

I am an ice pack person.

Pressure/compression helps when the blisters are swelling and popping. DON'T RUB. Roll a towel up and press on the area.

I had to keep mine moisturized 24/7; the need increased with the age of the sores. Vaseline helps when they are sloughing off.

I had the "blanket of rash" effect instead of individual lesions. This created a lot of scabbing. When in the shower I'd let them get soft then gently rub the scabs with my hands - whatever was ready to come off would peel off. I literally shed.

I could not use anything harsh: no alcohol, menthol, natural salt deoderant, etc. my skin would literally smolder. The rash would get raw.

My rash was under my arms, Suave unscented deoderant didn't seem to irritate the rash. Vanicream was my lotion of choice, coupled with Vaseline periodically.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#5 cindylou7

 
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Posted 12 September 2012 - 06:20 PM

I've used tea tree oil too and found relief. Surprised at the post about sun exposure...I thought it was just me! A trip to Hawaii brought out a painful ugly blistering rash on my forehead that everyone could see! Very embarrassing.
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“Worry is itself an illness, since worry is an accusation against Divine Wisdom, a criticism of Divine Mercy"

#6 greensleeve

 
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Posted 13 September 2012 - 10:51 AM

The only thing that has helped (minus steroid cream) has been manuka honey. Manuka honey is a mono-floral honey from New Zealand. The bees gather pollen from the manuka bushes in a particular region of the country and make the manuka honey. It is supposed to have antibacterial, antifungal and anti-inflammatory properties. I read about it on a natural skincare blog thought why not give it a try.

I bought my jar of honey at a health food store. I mix about a tbsp of honey with several drops of bottled water (makes spreading easier) and rub it onto my face. I wear this as a mask for 2-3 hours while I work around the house. It was sticky and weird at first, but I am used to it now. It has made my skin smoother, less inflamed, and I see fewer bumps when I use it consistently. It also reduces the itching. I currently use this 3-4 times per week. Yes, it is a bit of a pain to do this, but I was desperate for a solution for these awful bumps on my face. It will be more difficult to use on some parts of the body, but perhaps it could be covered with a bandage or dressing during treatment.

I have only used manuka honey and cannot vouch for the efficacy of other types of honey.
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#7 jmb002

 
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Posted 15 September 2012 - 04:39 AM

Oh my gosh Sqirmingitch, it is like it was me talking! I have been saying for weeks whenever I exercise my rash flares up, whenever I sweat my rash flares up.....even taking a hot bath my rash flares up! Crazy! This thread is a great idea! Thanks! :)
Jenn
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#8 squirmingitch

 
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Posted 15 September 2012 - 08:47 AM

Oh my gosh Sqirmingitch, it is like it was me talking! I have been saying for weeks whenever I exercise my rash flares up, whenever I sweat my rash flares up.....even taking a hot bath my rash flares up! Crazy! This thread is a great idea! Thanks! :)
Jenn


Yes, & I wonder if the sun thing is not due necessarily to the sun itself but due to us getting heated by the sun. Sorta makes it hard to get our Vit D from the sun.Posted Image
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#9 OnTheBrighterSide:)

 
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Posted 20 September 2012 - 08:52 AM

My DH is on my face sometimes its so inflammed i wont go out in public.

Things that flare my DH
Sun ,heat, humidity and exercising.
Especially if need to be somewhere on time and start to get anxious about being late. I really flare up. I beleive stress makes mine worse

Some things that work for and things I would not recommend.

calamine lotion pink works (but sometimes dries it out to much)

cold compresses dry (i wrap a thin sheet type material. around an ice pack)

If you are going to be in the heat try to prevent the sweat/perspiration from staying on your skin for to long. I usually bring a cotton handkerchief and keep dabbing off areas that seem to get perspiration (yes,they still sell handkerchiefs and they work great because they are so thin.) If you have areas on your face that you want to cover up with makeup let me know I found a few that won't irritate my DH.

Cortisone works at first but can cause problems later i would N O T recommended using it on your face though.
My experiences and research on cortisone.
I believe 1% is the maximum strength for the face - beyond that you risk permanent damage. Cortisone cream applied to the face has also been linked to people developing permanent infections, or conditions which will cause repeat infections. I have been dealing with this on my face for over 10 years. And at first cortisone on my face worked great but when i stopped,it cames back with revenge. I had to ween my self off if it. Cortisone ointments and creams can cause increased facial hair growth if they are used frequently. These products are not intended for regular, long-term use and they used to be available by prescription only for this reason. I wish i. would have know this 10 years ago.


DAPSONE RX. 2 25 mg a day. For inflammation and itching so it can heal. I jusy started taking it the second week in september2012 works wonderful on the itching and brought down inflammation. But I developed a bad chest and head cold along with fever and chills after 6 days. The doctor said to stop taking temporary to make sure it was a reaction or it could of been the flu. I only stopped for a day and a half and i can feel the inflammation starting up. I think I will start it up again and only take 25 mg instead of 50 mg like the pharmacy recommended. I' ll keep you posted.

Drink as much water you can.

Staying on a gluten free diet cutting out dairy and using gluten free things on skin and hair helps keeps it under control


Sorry so long
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#10 Anianna

 
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Posted 20 September 2012 - 04:17 PM

A friend of mine sent me colloidal silver to try topically (in a little spray bottle). I find that it reduces the blisters very well and reduces discomfort slightly, but not much else. I don't find any research on the matter and this is just my personal experience.

Regarding the sun, there are several companies that make sunblock clothing. I have a long-sleeve wrap designed for summer wear and a hat that are both sunblock rated and I find those help.
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#11 sisterlynr

 
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Posted 14 November 2012 - 02:49 AM

My DH is on my face sometimes its so inflammed i wont go out in public.

Things that flare my DH
Sun ,heat, humidity and exercising.
Especially if need to be somewhere on time and start to get anxious about being late. I really flare up. I beleive stress makes mine worse

Some things that work for and things I would not recommend.

calamine lotion pink works (but sometimes dries it out to much)

cold compresses dry (i wrap a thin sheet type material. around an ice pack)

If you are going to be in the heat try to prevent the sweat/perspiration from staying on your skin for to long. I usually bring a cotton handkerchief and keep dabbing off areas that seem to get perspiration (yes,they still sell handkerchiefs and they work great because they are so thin.) If you have areas on your face that you want to cover up with makeup let me know I found a few that won't irritate my DH.

Cortisone works at first but can cause problems later i would N O T recommended using it on your face though.
My experiences and research on cortisone.
I believe 1% is the maximum strength for the face - beyond that you risk permanent damage. Cortisone cream applied to the face has also been linked to people developing permanent infections, or conditions which will cause repeat infections. I have been dealing with this on my face for over 10 years. And at first cortisone on my face worked great but when i stopped,it cames back with revenge. I had to ween my self off if it. Cortisone ointments and creams can cause increased facial hair growth if they are used frequently. These products are not intended for regular, long-term use and they used to be available by prescription only for this reason. I wish i. would have know this 10 years ago.


DAPSONE RX. 2 25 mg a day. For inflammation and itching so it can heal. I jusy started taking it the second week in september2012 works wonderful on the itching and brought down inflammation. But I developed a bad chest and head cold along with fever and chills after 6 days. The doctor said to stop taking temporary to make sure it was a reaction or it could of been the flu. I only stopped for a day and a half and i can feel the inflammation starting up. I think I will start it up again and only take 25 mg instead of 50 mg like the pharmacy recommended. I' ll keep you posted.

Drink as much water you can.

Staying on a gluten free diet cutting out dairy and using gluten free things on skin and hair helps keeps it under control


Sorry so long


Would like to keep in contact with you. I started Dapsone around the 19th of October 2012. I also started a diet of gluten free and Iodine free that same day per my doctor's request. I see great improvement but am not completely itch free. Has Dapsone taken all of your itch away?

I find ice does help with relief
I take Benadryl almost everyday, especially at night time to help with sleep.
I like Sarna lotion as it calms the itch
Witch Hazel is soothing
Apple Cider Vinegar (diluted) is soothing and helps with inflammation
Using Argan ointment and healing lotion
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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#12 Darkfire Ann

 
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Posted 07 December 2012 - 11:33 PM

I have a few more.

I have a compound w/ and w/out steroids. Using Moisturel, Menthol, Triamcinolone, Jojoba, Tea Tree, Aloe and a tad of 91% alcohol to melt the menthol. Take out the Triamcinolone and it's steroid free. My Derm added Phenol and charged me $50 bucks. I made a gallon for about $15 bucks minus the Phenol. I keep some in the fridge, some at my desk, some by the bed, etc. Cera Ve is the closest to Moisturel if you cannot find it or want something a little cheaper.

I need so much moisture it is frightening. I have gone through so many tubes of three different steroids it's a wonder I have skin. I am not sure any of them work.

When I am at my wits end and bleeding I get in the shower. I use self made lye soap. Simple recipe with no scent and it burns so bad I scream. I ONLY use what I make, hair, body and face. NO commercial soap, poos of any kind. I deal with the the skin sloughing off then immediately use Hibiclins and it calms the pain. Also, I cannot shave under my arms or use deodorant so the Hibiclins keeps me smelling nice.

I layer treatments. Some do not spread well some do. I layer a menthol lotion with a thick steroid ointment then a poison ivy spray on top to numb my skin so I stop tearing it up. I have to keep moisturizing because every numbing treatment is drying. The Poison Ivy Spray is Walgreens brand and has Menthol, Camphor, Benzyl Alcohol and Zinc in it. It numbs and dries, as poison ivy is weepy. Well this Dh weeps too but I am also so dry.

My derm has me using Aquaphor on my hands, elbows, and back. It does protect a little. The PA-C at the derm wanted me to bathe in the stuff but it was no use.

Taclonex worked on the back of my scalp and over my ears. Even though it is for Psoriasis I tested negative on two biopsies for Psoriasis. My derm gave it to me for free as it is a HUGELY expensive medication. A little goes a long way. Like one treatment every other day for a week helped ALOT. Sadly I am cross reacting to something so it's coming back. It is pretty much pure oil. Also, Oil licious by Got 2 B works amazingly for the scalp itch and back of the neck, ears.

I pretty much wear pajama pants or leggings and faux fur slippers or flip flops with sports bras under soft tunics 24/7 with soft socks cut into arm/hand warmers. I had to buy a new wardrobe and new comforters. Faux fur is like heaven to me.

I keep my nails trimmed to the quick and painted trying to limit the damage but I cannot control it. I wake up scratching, I remove gloves in my sleep. Stopping the itch scratch cycle is not possible for me right now.

I welcome any suggestions. I am new here.

Once I can post pictures you will see I am a really BAD case and it started in August 2012. I am almost to the point of being hospitalized.
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#13 Darkfire Ann

 
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Posted 10 December 2012 - 10:01 PM

For visual folks here is a picture of the compound I tweaked from my derm. To one 15gr tube of steroids I use 1 bottle of moisturel and 3 grams of menthol crystals. That's right THREE GRAMS. That is ALOT of menthol, trust me. The alcohol is only to melt the menthol as it is soluble in alcohol. It is partially soluble in glycerin as well but it was easier just to use alcohol. This is the basic recipe and is kept in the fridge. It works for itching but you still need a moisturizer on top of this.

Posted Image
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#14 squirmingitch

 
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Posted 13 December 2012 - 06:20 PM

Here are some things that are NOT good for the dh.

NSAID's such as Advil & Aleve make the dh go crazy. I find that even Tylenol, if I'm not extremely judicious, will make my dh flare.

I have also recently discovered that Vit C ( at least the pills) makes my dh go nuts! I have tested this & it really affects me.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#15 Darkfire Ann

 
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Posted 14 December 2012 - 01:21 AM

Here are some things that are NOT good for the dh.

NSAID's such as Advil & Aleve make the dh go crazy. I find that even Tylenol, if I'm not extremely judicious, will make my dh flare.

I have also recently discovered that Vit C ( at least the pills) makes my dh go nuts! I have tested this & it really affects me.


I am fighting with this as a chronic pain patient in severe pain and trying to manage. Not to mention scarfing down vit c pills with my iron pills because I am in bad shape iron wise. Due to dye allergies and Tylenol allergies all my meds are prescription. At this point I do not know what to do. One step at a time. No more steroid creams, letting my body get over that. Coming into Day three, still insane.
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