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Dapsone


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12 replies to this topic

#1 hippo33

 
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Posted 22 February 2010 - 01:32 PM

if my skin condition eventualy goes away when im on dopsone for a while will i still have to go gluten free
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#2 ChemistMama

 
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Posted 01 March 2010 - 07:19 PM

if my skin condition eventualy goes away when im on dopsone for a while will i still have to go gluten free


Yes. If you do not, when you stop taking Dapsone the DH will come back. You will need to be gluten-free from now on. That is the only way to keep your DH under control. Some people keep eating gluten while on dapsone, but then in the future have the GI issues of celiac and corresponding complications(stomach problems, osteoperosis, problems from not absorbing nutrients).
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#3 ravenwoodglass

 
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Posted 02 March 2010 - 12:32 PM

Yes you need to be gluten free and now. Celiac can effect your whole system in ways you most likely couldn't even imagine. It can increase you risk of some types of cancer, lymphoma for one, mental illness, you can develop brain lesions that will make it hard to walk, you can develop issues with your liver, gallbladder, arthritis well the list goes on.
Dapsone is also not a risk free drug and you want to be on it for as little time as possible. The ideal is to forgo the dapsone and just do the diet strictly as that alone will heal you.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 lovegrov

 
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Posted 02 March 2010 - 12:40 PM

If you stop taking dapsone the Dh will come back. I took dapsone for 20 years but the celiac caught up with me (I had never heard of celiac and didn't realize what the DH meant), putting me in the hospital for 11 days and costing me more than 10 weeks of work. You don't want to go there.

richard
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#5 declan

 
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Posted 03 April 2010 - 08:42 AM

if my skin condition eventualy goes away when im on dopsone for a while will i still have to go gluten free




I could not get dapsone here in Spain (after 15 years on Dapsone). I was panicking. Eventually i was prescribed "colchicine houde" but this made me very, very ill. So i stopped taking it! It has been four months now since i took dapsone, the skin rash has not come back and i feel well. I am still worried that it will return, but so far so good. I am glad to be off sulphapyridine and dapsone after many years, over 40 altogether. One doctor on a UK website said that this can happen and for me im glad that it did.

good luck

declan
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#6 Nickie

 
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Posted 04 May 2010 - 07:22 PM

You should go gluten free now instead of causing you more pain and suffering later. I started getting DH at age 12, 40 now, No one coule ever diagnose it they had no clue. I asked to be tested for in in 2006, finally figured it out then did the blood test and was positivly diagnosed with celiac disease, I started dapsone at 100 mg a day and spent about 3 months gluten free then reverted back to the old ways of eating while contiuing with the dapsone, May 2009 10 days in the hospital in ICU with an allergic reaction to dapsone, basically my blood was not allowing oxygen to bind, I was dying. No more dapsone for me then to tetracycaline and niacin, could not tolerate the niacin, still eating gluten, then to sulfasalazine, now my blood test come back thinking I am an ederly person whose kidney's are failing so they may be who knows. Now gluten free again for a week, small break up started yesterday made toast (udi's bread) in the house toaster. I just went out and bought a new one. So now there is absolutely no other medication I can take other than not letting 1 little mg of gluten enter my body unless I want to break out.

So start Gluten Free now and from experience save the pain and hardship. It is hard to eat glutenfree but the products that are now available so much outweigh what was available even 3 years ago. Your choice just offering my experience.

GOOD LUCK!!!
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Diagnosed with DH 2/27/06, with positive skin biopsy, after 24 years
Diagnosed with celiac disease 3/7/06 with positive bloodtests

#7 tealiemonster

 
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Posted 30 December 2012 - 07:20 AM

I was told that I could come off the Dapsone after 6 months to a year of strict gluten-free diet, does that sound right? Is it really going to take that long for the GFD to kick in?
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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

#8 squirmingitch

 
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Posted 30 December 2012 - 10:15 AM

To the OP:
Dapsone does not cure celiac disease & if you have dh, you have celiac disease PERIOD! As long as you continue to eat gluten then you are destroying your villi. There are no 2 ways about it. You can get Hashimoto's Thyroiditis, anemia from malabsorbtion, neuro issues, gluten ataxia, pain in your body like you wouldn't believe, as well as the other things that have been mentioned.
Dapsone masks dh, that is all. If you keep eating gluten then the second you come off Dapsone you will return to dh. The idea behind Dapsone is to give you relief from the dh until you have been gluten-free long enough to get most of the antibodies out of your skin.

tealiemonster, all of the med literature I have seen says 2 years on Dapsone & even then you will have some dh but it's supposed to be bearable by then. It's not the gluten free diet that has to kick in ---- it's the antibodies have to get out of your skin & that does require a strict gluten-free diet. We are all individuals & therefore no one can truly say..... "tealiemonster, it will take you X time on Dapsone & you will no longer have dh outbreaks". Not even the doctor. Sorry; it just ain't true. That could be better determined down the road if your dose of Dapsone is decreased & your dh continues to be controlled by the decreased dosage. Then a guess could be more easily made as to how long overall you will need to continue on Dapsone.
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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 tealiemonster

 
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Posted 30 December 2012 - 10:32 AM

so do you think if I am ascribing to a GFD I can taper off the Dapsone now and it would potentially not come back? That would be very cool.... I imagine prolly not though -_-
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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

#10 sisterlynr

 
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Posted 30 December 2012 - 11:31 AM

so do you think if I am ascribing to a GFD I can taper off the Dapsone now and it would potentially not come back? That would be very cool.... I imagine prolly not though -_-


WOW. . . you responded quickly to Dapsone! I've been on it since 10/20/12 and still have lesions/blisters. The Dapsone has made my symptoms tolerable. I've also been gluten-free from the same date. I can tell when I've eaten gluten (by error) I have blisters come back and itching but they seem to resolve in a week.
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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~


#11 tealiemonster

 
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Posted 30 December 2012 - 11:47 AM

Yeah I feel like I am one of the lucky ones, low dose too. Maybe you need to up ur dosage? I would figure you'd have more relief by now! I am very new to all this but maybe the clobetasol propionate and Elidel I've been cramming into my skin for the last 15 years kept me from having the disease as deeply manifested in my dermis

  • 0
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

#12 squirmingitch

 
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Posted 30 December 2012 - 11:52 AM

so do you think if I am ascribing to a GFD I can taper off the Dapsone now and it would potentially not come back? That would be very cool.... I imagine prolly not though -_-


tmonster, You could try it & see. I doubt you will stay clear for long but you never know. If your doc says you can go back on it when you need to. But remember what I said? About the dh can present whenever it darn well pleases gluten-free diet or no UNTIL ALL THE ANTIBODIES ARE OUT OF YOUR SKIN. Example: I was doing real good. Been strict gluten-free from Dec. 1, 2011 & in July/Aug. of 2012 I was almost completely clear of ANY dh. First week of Sept. 2012 & I began to have an outbreak like gonzo & it continues to this very day. And there isn't a snowball's chance in hell that I got glutened or cc'd. It's just "spontaneously presenting". This is the vexing thing about dh.
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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.

 


#13 sisterlynr

 
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Posted 31 December 2012 - 01:47 AM

I don't think my PCP wants to up the dose of Dapsone. I am diabetic and maybe that has attributed to the lesions not healing as quickly. I know I've had the blisters break out for at least 30 years at different times and just think that with my low immune (NH Lymphoma) the DH just went wild this year.
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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~





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