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Will Dapsone Help Dh Before Going Gluten Free?


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#1 SeekingSarah

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Posted 26 March 2013 - 09:03 PM

Currently have severe outbreak of DH (my own self dx) on scalp, and face...waiting to see GI for testing on April 1st. Would asking NP for prescription of Dapsone actually provide any relief of the DH given I'm still consuming gluten?


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#2 sisterlynr

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Posted 26 March 2013 - 09:16 PM

Your doctor should check your blood to see if you can tolerate Dapsone.  He/She would order a CMP and CBC first.  When my doctor ordered Dapsone it was on the condition that I would start the gluten-free diet and see her on Monday.  I started both on a Friday and felt a difference within 72 hours.

 

 

I was eating gluten-free but by accident ate foods that were not gluten-free and the symptoms did increase, even while taking Dapsone.  Just sharing what happened with me. . . others may have a different reaction and/or opinion.


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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~


#3 SeekingSarah

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Posted 26 March 2013 - 09:20 PM

Well give her response when I mentioned Celiac...she went out of the room to call the GI to see if he even did Celiac testing (small town)...I doubt she'll prescribe a medication she is unfamiliar with, she gave me a prescription for some type of shampoo, and IBS meds, I didn't go pick up either as I figure it's a waste and I don't want to take or use anything that might mask or affect tests. These sores are just so annoying, they make my entire head throb.


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#4 sisterlynr

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Posted 26 March 2013 - 09:39 PM

I had to beg my PCP to let me try Dapsone.  It can affect your blood, kidneys and liver.  When she saw the results and my blood levels were okay. . . she told me she only had 1 other patient on Dapsone.  I understand the scalp being so sore.  I never have break outs on my face, never really did even in my youth.  I have a lesion on each jawline, both temples and both side of my upper forehead. The ones on my scalp are all across the lower part and both sides above the ears.  I don't know what it is about DH but once these places are even rubbed, they bleed and bleed . . . 

 

My blood tests for Celiac was negative and 6 biopsies on my back were too.  The Dermatologist took biopsies of the lesion and should have taken next to a lesion from clear skin. . .  You can read all about that on the DH pages.   You will learn much on this site.  Good luck.


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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~


#5 SeekingSarah

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Posted 26 March 2013 - 10:00 PM

Yes, I have learned so much already! Thank you everyone. Anxiously awaiting my PCP of 9 years to return from maternity leave so I can tell her I think I've solved the mystery. Waaaay back when I first started to see her I mentioned the sores on my head she gave me some medicated mousse it was super expensive even through my pharm mail order, since it didn't really work I never got it again. I think I usually just figured it was my thick hair, pressure sores, something...growing up blamed them on rubbing from hair clips. Asked her about the places on face...lip and chin and she gave me a gel, but again just guessing what it might be...of course when she sees spots on my back or upper arms where I've scratched she gently scolds me "stop that". So this combined with the all the other symptoms I've had that test come back normal so we just kinda shrug and say "well don't know what it is but not causing distress and tests are normal"...I know this might sound as if she's not good...but she did refer me to a GI and he brushed symptoms off to IBS...once I show PCP the connections of everything I have no doubt she'll research it herself, when I was having breathing issues she was doing extra reading, about possibilities, but I can't fault her for not being fully educated on this when a GI wasn't. The most important thing is she will listen to me... dealing with an NP until then...doesn't know me or my issues as well...and is in different state...I'm in Ohio now...PCP is in FL.


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#6 pricklypear1971

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Posted 27 March 2013 - 06:54 AM

If your doc will listen, give her a list of celiac blood tests and she can order them.

As far as biopsying your skin she may be able to do that if she has the equipment; otherwise, you need a dermatologist.

You can also order celiac blood tests from online labs.
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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!

#7 SeekingSarah

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Posted 27 March 2013 - 09:01 AM

PCP is in FL, not sure when she will be back from maternity leave. I have appointment with a GI on April 1st, if he isn't responsive they why yes I'll get PCP to run test, I'll be down there later in April and I'm sure her partner would order them for me if she isn't in office.


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#8 SeekingSarah

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Posted 27 March 2013 - 12:37 PM

:angry: Saw the NP today, should have just cancelled the appt given I did not pick up either med she offered...script for anti-fungal shampoo and IBS meds. I told her since I got an earlier appt I didn't want to try any new meds that might mask symptoms, she just said be sure and cancel the appt with the other GI to which she referred me to and that she "looked up some information on it and doesn't think I have it"..."it"...ok well since you've only known me since August and I have 9 years...or wait a lifetime of symptoms to go by...I'll stick with my own self directed plan to get tests and dx. GRRRRRR


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