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Meds For Dh - Dapsone And Others


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7 replies to this topic

#1 tealiemonster

 
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Posted 29 December 2012 - 06:49 PM

Initial skin biopsy (punch): eczema negative, puritic vesicle observed
Immunoflorescence IgA skin biopsy (punch): Weak Postive
Blood Serum Celiac Comprehensive Panel (Quest Diagnositics - Ttg, EMA & EMA Titers): Positive
Small Intestine biopsy (EGD): negative

(pictures from Oct 2012 - prior to biopsies, tests & Dapsone use)

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Looks a lot like mine me thinks ;) I was sucessful using clobetosol propionate to keep my itching low and the blisters controlled, but I was going through like 4-5 15mg tubes a month... on that high potency corticisteriod that's only supposed to be used 10 days at a time :/

Thanks for posting your pics it helps with my peace of mind... too bad it can't help with the gluten-withdrawl nauseous I have right now :(
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Skin Scraping for microscopic analysis - negative for scabies 9/24/2012
Punch Skin Biopsy in 10% formalin for microscopic analysis - negative for eczema marker, vesiculobullous observed 10/9/2012
Prednisone 10mg 2x daily - no improvement 11/09/2012
Punch Skin Biopsy in michael's solution for Immunoflorescence IgA testing - Weak Positive 10/15/2012
Blood Serum test, Quest Diagnostics Comprehensive Celiac Panel (Ttg, EMA & EMA Titers) - Positve 11/26/2012
Blood Serum test, RAST Wide Geographic Screening (not Wheat) - Negative 11/26/2012
Dapsone 25mg 2x daily since 11/26/2012 (itching gone in 24 hrs, rash gone in 48 hrs, lesions healed in 1 mos)
Small intestine biopsy (EGD) 3 samples taken - Negative 12/18/2012
Diagnosed Dermatitis Herpetiformis by Dermatologist 11/15/2012, Diagnosed Celiac by Primary Care Physician 11/30/2012
Gluten Free 12/28/2012

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#2 moneek

 
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Posted 29 December 2012 - 07:27 PM

Looks a lot like mine me thinks ;) I was sucessful using clobetosol propionate to keep my itching low and the blisters controlled, but I was going through like 4-5 15mg tubes a month... on that high potency corticisteriod that's only supposed to be used 10 days at a time :/

Thanks for posting your pics it helps with my peace of mind... too bad it can't help with the gluten-withdrawl nauseous I have right now :(


can you do lactose products? yogurt and kefir are great for nausea and stomach discomfort, and, if not loaded with sugar, etc., have great pro-biotic effect. also, ginger tea.

and, yes, your rash looks a lot like mine.

.... moneek
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- Monique

- Dx w/ Hashimoto's 09/2012
- Low-dose Synthroid, starting 10/15/2012
- Dx w/DH 10/2012 via skin biopsy + presentation of rash
- starting the gluten-free challenge week of 10/22/2012

#3 sisterlynr

 
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Posted 30 December 2012 - 04:31 AM

I was able to post my photos to photobucket .... unfortunately, they are in reverse order, the first ones, the majority of the pix, are from December 2012; the last ones are of the initial manifestation of the rash back in July 2012, plus a few in between from November, when I actually thought I was getting a bit better. take a look:

http://s1272.beta.ph...lamb/library/DH

My case is complicated by a Dx of Hashimotos during the same time period (August 2012), so I have this conflict regarding Iodine - it appears dietary Iodine can aggrevate the DH rash, but Iodine is needed for healthy thyroid function. So, I am trying to balance all of this and learning more every day.

I use no cosmetics at all, with the exception of gluten-free lipstick (Gabriel's), I lubricate the rash with a combination of pure coconut oil and borage oil lotion (shikai children's lotion, gluten-free, per the manufacturer: http://pics1.ds-stat...g/75483/300.jpg )

I'm also avoiding the majority of gluten-free food products out there - they are loaded with corn and tapioca and lots of ingredients that I have never heard of. I am eating mostly whole foods, fruits, veggies, meats, chicken, etc.

Best of luck to everyone.
M



So sorry for the loss of your home! I believe when I become anxious the remaining lesions itch more. I have pics on photo bucket too, in past postings.

Your earlier photos are so much like my rash. I broke out severely on 3/1/12 and started Dapsone & gluten free on 10/20/12 without a diagnosis. You can look at my photos and history on the forum. When I saw your outbreak from July, I cringed remembering the sting, burn and itch. I am 100% gluten free but when I eat out I'm finding I'm getting cc, especially when I have corn tortilla's that evidently are prepared with flour foods. :( The majority of my lesions have healed to the purple stage with rough skin. I haven't posted my Mar pics but did post pics after a month on Dapsone. The lesions were still quite bad but with tolerable symptoms. Good luck with following the diet and as cleared as you are responding to being gluten-free, Dapsone would probably clear you very quickly. You will receive good advice from the members that have been on here for quite some time. . .
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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~


#4 moneek

 
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Posted 30 December 2012 - 04:58 AM

So sorry for the loss of your home! I believe when I become anxious the remaining lesions itch more. I have pics on photo bucket too, in past postings.

Your earlier photos are so much like my rash. I broke out severely on 3/1/12 and started Dapsone & gluten free on 10/20/12 without a diagnosis. You can look at my photos and history on the forum. When I saw your outbreak from July, I cringed remembering the sting, burn and itch. I am 100% gluten free but when I eat out I'm finding I'm getting cc, especially when I have corn tortilla's that evidently are prepared with flour foods. :( The majority of my lesions have healed to the purple stage with rough skin. I haven't posted my Mar pics but did post pics after a month on Dapsone. The lesions were still quite bad but with tolerable symptoms. Good luck with following the diet and as cleared as you are responding to being gluten-free, Dapsone would probably clear you very quickly. You will receive good advice from the members that have been on here for quite some time. . .


How long were you [or are you] on Dapsone? any side effects? I am leery of that drug.
best wishes.

moneek.
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- Monique

- Dx w/ Hashimoto's 09/2012
- Low-dose Synthroid, starting 10/15/2012
- Dx w/DH 10/2012 via skin biopsy + presentation of rash
- starting the gluten-free challenge week of 10/22/2012

#5 sisterlynr

 
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Posted 30 December 2012 - 11:50 AM

How long were you [or are you] on Dapsone? any side effects? I am leery of that drug.
best wishes.

moneek.


I started the Dapsone on Oct 20, 2012. I started the gluten-free diet on the same day. I have had monthly blood test and have had no problems. In fact, I was anemic/ low iron and it was normal on my last labs. I was expecting faster results but I could feel a difference in the intensity of the itch, sting, burn within 3 days. I am scheduled to see a new Dermatologist in Feb to have light therapy too. I was to the point that I literally begged my PCP to allow me to try the Dapsone. She was most concerned that my blood was already low and I could possibly need a transfusion. I told her. . . hey, that's ok . . had blood transfusions during chemo and I'd rather have a transfusion than to continue to itch so badly! I'm due back for a check up next week. She only prescribes a month at a time so I HAVE to check in with her. . . . :rolleyes:
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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~


#6 moneek

 
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Posted 30 December 2012 - 05:18 PM

I started the Dapsone on Oct 20, 2012. I started the gluten-free diet on the same day. I have had monthly blood test and have had no problems. In fact, I was anemic/ low iron and it was normal on my last labs. I was expecting faster results but I could feel a difference in the intensity of the itch, sting, burn within 3 days. I am scheduled to see a new Dermatologist in Feb to have light therapy too. I was to the point that I literally begged my PCP to allow me to try the Dapsone. She was most concerned that my blood was already low and I could possibly need a transfusion. I told her. . . hey, that's ok . . had blood transfusions during chemo and I'd rather have a transfusion than to continue to itch so badly! I'm due back for a check up next week. She only prescribes a month at a time so I HAVE to check in with her. . . . :rolleyes:


that's encouraging about the relief you got from Dapsone; I will find out on Wednesday if the MDs think it's appropriate for me.

Happy 2013!! I hope it's a better year than this one was.

...m
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- Monique

- Dx w/ Hashimoto's 09/2012
- Low-dose Synthroid, starting 10/15/2012
- Dx w/DH 10/2012 via skin biopsy + presentation of rash
- starting the gluten-free challenge week of 10/22/2012

#7 moneek

 
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Posted 30 December 2012 - 05:21 PM

Yes, I have it bad. I see a new dermatologist from University S Florida on Dec 6th. I see my PCP this coming Tues. I really am healing. :) The ones from my wrist to elbow have healed and just have dark spots, no itch. From my elbow to shoulder is trying to heal but I keep taking off the scabs. Not really itching there but feel the dryness. The lesions on both knees have healed just leaving discoloration. The sole of my right foot has healed completely. I guess just the stomach, back, buttocks, chest and scalp still have sensations. Like sitting here, I am aware that my skin feels tight and I could scratch my belly BUT I can control the urge. Dapsone has not taken that away completely with 2 a day = 50. It is so hard not to pick at my scalp :( the skin is really rough with scabs. I see such great improvement. Thankful for that!

My family keeps reminding me how much better I am. They have been so patient with me during the past 10 months, helping me apply the ointments to my back.

I've decided to eat at home unless there is a special occasion so I can know for sure, what I am eating. Thank you so much for your advice and response. :)


I only eat at home as well after getting cross-contaminated twice (I think so, anyway); it's difficult socially as most folks just don't really understand. They think, just a little bread, just one cookie, or whatever. I find it's easier to just be a bit isolated at the moment until I feel stronger.

.... m
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- Monique

- Dx w/ Hashimoto's 09/2012
- Low-dose Synthroid, starting 10/15/2012
- Dx w/DH 10/2012 via skin biopsy + presentation of rash
- starting the gluten-free challenge week of 10/22/2012

#8 a1956chill

 
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Posted 01 January 2013 - 03:46 AM

My case is complicated by a Dx of Hashimotos during the same time period (August 2012), so I have this conflict regarding Iodine - it appears dietary Iodine can aggrevate the DH rash, but Iodine is needed for healthy thyroid function. So, I am trying to balance all of this and learning more every day.


Yep it is a balancing act for sure.... One I deal with on a daily basis ,
It does get easier in that you will learn how high or low iodine you need to be. And you begin to recognize the signs of when you need to cut back or add more . Me,, I push that limit to the brink everyday ( but I am like that :P :D )


It is interesting ( maybe a mute point but interesting just the same ) that I was also diagnosed with Hashimoto's within a month of my DH ( positive biopsy ) and my "official" Celiac diagnoses .
.In my case I had just plain had enough and INSISTED ( rather loudly I might add :angry: )that the doctors take me seriously and they did A LOT of testing ( probably just to shut me up :rolleyes: )
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing





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