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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Dapsone ~ Members Taking Dapsone Please Respond.
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27 posts in this topic

I have questions that I believe only people using Dapsone can answer.  I am on 75 mg Dapsone daily.  I started Dapsone and a gluten free and low iodine diet on 10/20/2012.

 

  • Do you have new outbreaks while on Dapsone?
     
  • Do you feel small bumps under your skin that do not break open?
     
  • If you eat gluten, do you breakout?
     
  • Do you still have episodes of intense itching?
     
  • How long did it take for your open lesions to heal?

 

If you have or are taking Dapsone, please respond.  I know every person may have different results but I really have concerns and maybe some answers will help me.
 

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I started Dapsone on 100 or 125 mg daily after severe outbreak in my face, on my legs and arms.

Came down to 50 mg daily and Although the doctor adviced (repeatedly) to follow a glutenfree diet, I did not follow any glutenfree diet up till 1 year ago.

I've stopped with Dapsone about 6 months ago (wanted to try out if I could do without Dapsone), and have been having small rashes occasionally until 3 weeks ago.

At this moment I'm having a severe and unstoppable outbreak on my feet/toes and thus will be restarting on Dapsone asap. I'm convinced in my case stress is definitely a trigger. Went on holiday 5 weeks ago for 2 weeks and by the time I returned home, my rashes had almost completely healed.

 

Anyway, to answer your questions:

 

  • Do you have new outbreaks while on Dapsone? --> no, only if I forget to take it. 1 forgotten tablet is enough to start itching here and there...
     
  • Do you feel small bumps under your skin that do not break open? --> no, not that I can remember.
     
  • If you eat gluten, do you breakout? --> no breakout as long as I'm taking my daily dose of Dapsone.  The smallest dose I can take without breakout is 50 mg daily.
     
  • Do you still have episodes of intense itching?  --> not while taking Dapsone.
     
  • How long did it take for your open lesions to heal?  --> Once started with Dapsone, the differeence in 1 week time was phenomenal (my doctor couldn't believe it healed so quickly). I think overall it took 2-3 weeks to heal.   The itching stopped within 12-24 hrs.
  •  

 

Hope this helps.

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I started Dapsone on 100 or 125 mg daily after severe outbreak in my face, on my legs and arms.

Came down to 50 mg daily and Although the doctor adviced (repeatedly) to follow a glutenfree diet, I did not follow any glutenfree diet up till 1 year ago.

I've stopped with Dapsone about 6 months ago (wanted to try out if I could do without Dapsone), and have been having small rashes occasionally until 3 weeks ago.

At this moment I'm having a severe and unstoppable outbreak on my feet/toes and thus will be restarting on Dapsone asap. I'm convinced in my case stress is definitely a trigger. Went on holiday 5 weeks ago for 2 weeks and by the time I returned home, my rashes had almost completely healed.

 

Anyway, to answer your questions:

 

  • Do you have new outbreaks while on Dapsone? --> no, only if I forget to take it. 1 forgotten tablet is enough to start itching here and there...

     

  • Do you feel small bumps under your skin that do not break open? --> no, not that I can remember.

     

  • If you eat gluten, do you breakout? --> no breakout as long as I'm taking my daily dose of Dapsone.  The smallest dose I can take without breakout is 50 mg daily.

     

  • Do you still have episodes of intense itching?  --> not while taking Dapsone.

     

  • How long did it take for your open lesions to heal?  --> Once started with Dapsone, the differeence in 1 week time was phenomenal (my doctor couldn't believe it healed so quickly). I think overall it took 2-3 weeks to heal.   The itching stopped within 12-24 hrs.
  •  

 

Hope this helps.

 

 

Thank you so much for your answers!  I am starting to believe that I have been misdiagnosed with DH.  I started a gluten free diet on 10/20/12 and .50 mg per day.  I did feel and see a change to the condition of my rash but it never completely cleared up.  The itching and burning seemed to subside to a point of tolerance.

 

In February of 2013, I stopped taking it and within 8 - 10 days the rash became as severe as it started in Feb of 2012.  I started taking it again but I'm not having anywhere near complete relief and the breakout is horrid.  My dose was upped to .75 mg a day about 3 weeks ago.  No relief.  I never stopped eating gluten-free and still eating gluten free.  

 

I am now concerned that I may have skin NH Lymphoma which a couple of my doctors thought originally.  I had chemo in 2008 for NH Lymphoma and I had the rash on my scalp then.  I don't know if you read my history but I had so many symptoms of Celiac way back.  I had the blisters on my feet and scalp and in 2010 on my hands.  I do have family history of Celiac.  One of my Aunts died at the age of 38 with Celiac colon cancer.  Her daughter was diagnosed about 7 years ago with Celiac and she does have the scalp break out.

 

If Dapsone should clear this up totally. . . it's not happening for me.   :(   Doctors gave me the DH diagnosis due to the improvement after the initial dose last year.  One of the 5 derms that I saw did take 2 biopsies correctly but he thought since I was taking the med and eating gluten-free they wouldn't show DH and they didn't.  I don't think they were looking for cancer and I was told the results were inflammation of skin.  I may need to ask for a copy of the report.  My phone with a camera is out of order today or I would post photos of what my skin looks like now.  It's pretty bad and I'm not an alarmist.  I know they can test my blood for indication of cancer.  I have a schedule appointment with my Oncologist in Sept but thinking of calling for an appointment next week.  

 

Again, thank you for your reply!  Not what I wanted to hear but certainly gives me added knowledge to pursue help with this horrid condition.  Just an after thought, Dapsone just may not work for me.  I sure don't want to have to go through chemo again.  The things I asked about are what I am experiencing and they fit the bill for skin lymphoma too.  I didn't realize that until last week.  

 

~  Lyn

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BTW, I do think stress affects me too.  I'm on SS Disability and not working so you would think, what stress?   

 

I worry about finances (had a great paying position) and there is a source of stress right now that I am able to stop.  I just need to make a decision which would involve moving from this area.  If that is what it takes, I'll do it, just plain and simple.  No one needs stress when dealing with this condition!

 

I hope your new outbreak resolves quickly!  

 

~ Lyn

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Being treated by a new Dermatologist.  He took 2 punch biopsies, gave me a cream to heal the open lesions and another to help with the itching.  He told me to continue Zrytec and Zantac and use Sarna and Vaseline to help with the itching and to keep my skin moist.

 

I had been to the ER as the lesion on my foot was quite nasty, painful and my foot was swollen.  The ER DR gave me Doxycline and Ativan to calm me.  I NEVER take this type of medication but I was a nervous wreak.  I was able to sleep for a full day which allowed me to be able to tackle this mess again.  

 

The ER DR called me the next day asking how I felt and did I fill the scripts.  He then called my PCP and asked her to see me. (Didn't know this until the next day) In the meantime, I had called this Dermatologist and asked for an emergency appointment.  The young lady at the front desk told me she couldn't get me in until the end of August.  I told her I guess that was okay, I'd just let this foot rot and fall off.   :ph34r:   In 15 minutes I received a phone call from my PCP's assistant telling me Dr. **** wanted to see me per the request of the ER doctor.  I told her what was up with getting an appointment with the Derm.  ** Big drama going on **   So, PCP calls and has an appointment for the next afternoon with the Derm and she will see me next week to follow up.

 

The Dermatologist told me: 

 

  • the Dapsone was NOT working as I should have cleared up within week. ( I've taken if for 8 months )  He has several patients on Dapsone for various illnesses
     
  •  He does not feel the rash is Candida, it would have cleared after 14 days of   Diflucan.
     
  • He is testing for NH Lymphoma skin rash which can be treated by chemo
     
  • Even though I'm eating gluten-free, still retesting for DH and other auto-immune rashes

​Just my update.  I've lost 55 lbs and if this is re diagnosed as DH, I will start a liquid diet until I have the rash under control.  Reached my limit . . .  SO  glad that all my doctors have been prompted to consult and reach a diagnosis, if possible.  The ER DR was quite surprised at the extent of my rash and would not touch my foot lesion.  I need to send him a card thanking him for his concern.  It was a great enough concern for him to follow up with me and my doctors. . .   

 

~ Lyn

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Thank you so much for your answers!  I am starting to believe that I have been misdiagnosed with DH.  I started a gluten free diet on 10/20/12 and .50 mg per day.  I did feel and see a change to the condition of my rash but it never completely cleared up.  The itching and burning seemed to subside to a point of tolerance.

 

In February of 2013, I stopped taking it and within 8 - 10 days the rash became as severe as it started in Feb of 2012.  I started taking it again but I'm not having anywhere near complete relief and the breakout is horrid.  My dose was upped to .75 mg a day about 3 weeks ago.  No relief.  I never stopped eating gluten-free and still eating gluten free.  

 

I am now concerned that I may have skin NH Lymphoma which a couple of my doctors thought originally.  I had chemo in 2008 for NH Lymphoma and I had the rash on my scalp then.  I don't know if you read my history but I had so many symptoms of Celiac way back.  I had the blisters on my feet and scalp and in 2010 on my hands.  I do have family history of Celiac.  One of my Aunts died at the age of 38 with Celiac colon cancer.  Her daughter was diagnosed about 7 years ago with Celiac and she does have the scalp break out.

 

If Dapsone should clear this up totally. . . it's not happening for me.   :(   Doctors gave me the DH diagnosis due to the improvement after the initial dose last year.  One of the 5 derms that I saw did take 2 biopsies correctly but he thought since I was taking the med and eating gluten-free they wouldn't show DH and they didn't.  I don't think they were looking for cancer and I was told the results were inflammation of skin.  I may need to ask for a copy of the report.  My phone with a camera is out of order today or I would post photos of what my skin looks like now.  It's pretty bad and I'm not an alarmist.  I know they can test my blood for indication of cancer.  I have a schedule appointment with my Oncologist in Sept but thinking of calling for an appointment next week.  

 

Again, thank you for your reply!  Not what I wanted to hear but certainly gives me added knowledge to pursue help with this horrid condition.  Just an after thought, Dapsone just may not work for me.  I sure don't want to have to go through chemo again.  The things I asked about are what I am experiencing and they fit the bill for skin lymphoma too.  I didn't realize that until last week.  

 

~  Lyn

Being treated by a new Dermatologist.  He took 2 punch biopsies, gave me a cream to heal the open lesions and another to help with the itching.  He told me to continue Zrytec and Zantac and use Sarna and Vaseline to help with the itching and to keep my skin moist.

 

I had been to the ER as the lesion on my foot was quite nasty, painful and my foot was swollen.  The ER DR gave me Doxycline and Ativan to calm me.  I NEVER take this type of medication but I was a nervous wreak.  I was able to sleep for a full day which allowed me to be able to tackle this mess again.  

 

The ER DR called me the next day asking how I felt and did I fill the scripts.  He then called my PCP and asked her to see me. (Didn't know this until the next day) In the meantime, I had called this Dermatologist and asked for an emergency appointment.  The young lady at the front desk told me she couldn't get me in until the end of August.  I told her I guess that was okay, I'd just let this foot rot and fall off.   :ph34r:   In 15 minutes I received a phone call from my PCP's assistant telling me Dr. **** wanted to see me per the request of the ER doctor.  I told her what was up with getting an appointment with the Derm.  ** Big drama going on **   So, PCP calls and has an appointment for the next afternoon with the Derm and she will see me next week to follow up.

 

The Dermatologist told me: 

  • the Dapsone was NOT working as I should have cleared up within week. ( I've taken if for 8 months )  He has several patients on Dapsone for various illnesses

  •  He does not feel the rash is Candida, it would have cleared after 14 days of   Diflucan.

  • He is testing for NH Lymphoma skin rash which can be treated by chemo

  • Even though I'm eating gluten-free, still retesting for DH and other auto-immune rashes
​Just my update.  I've lost 55 lbs and if this is re diagnosed as DH, I will start a liquid diet until I have the rash under control.  Reached my limit . . .  SO  glad that all my doctors have been prompted to consult and reach a diagnosis, if possible.  The ER DR was quite surprised at the extent of my rash and would not touch my foot lesion.  I need to send him a card thanking him for his concern.  It was a great enough concern for him to follow up with me and my doctors. . .   

~ Lyn

I have been on Dapsone for over 2 years.I did a lot better the first 6 months than I am now,I may need to increase my dose. The last 5 /6 months have been a nightmare. I have recently had additional family maters on me and I have not watched my diet like I should have. I am also allergic to corn and corn syrup is everywhere.my DH is on both arms and I am very restricted on so many things.I have the large lumps all in my arms. I can not lay on my arms and use a ice pack just to num the pain.I can not go outside without new breakout from the sun and the heat causes me to itch so had!!! I am totally miscible and have no idea what to do for myself
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I have been on Dapsone for over 2 years.I did a lot better the first 6 months than I am now,I may need to increase my dose. The last 5 /6 months have been a nightmare. I have recently had additional family maters on me and I have not watched my diet like I should have. I am also allergic to corn and corn syrup is everywhere.my DH is on both arms and I am very restricted on so many things.I have the large lumps all in my arms. I can not lay on my arms and use a ice pack just to num the pain.I can not go outside without new breakout from the sun and the heat causes me to itch so had!!! I am totally miscible and have no idea what to do for myself 

 

Lala Revell:

 

I feel for you.  If you had a clearing of the rash with Dapsone for 1.5 year, it would cause you to think you need a higher dose.  I was only taking .50 mg and upped to .75 and had such a horrific response to the additional dose.  I could be allergic to Sulfa drugs too.

 

I think heat causes most irritated skin to be worse and I've experienced that also.  One of my doctors told me to take Zrytec and Zantac together to reduce the histamine reaction, it does seem to help.  I already took Prilosec for my stomach but he explained the difference between it and Zantac.  That may help you?

 

The lumps under my skin are pretty small, maybe the size of a pea or less.  I feel them everywhere, not just on my arms.  My scalp had a renewed outbreak just a couple of days ago and now is so sore, good size lumps on my head.  As of yesterday, my biopsy reports were not back as he asked for DIF and it takes a bit longer than usual. 

 

I am still gluten-free and very cautions about being cc with foods prepared outside of my home.  I am eating veggies, meat and sometimes  a snack of chips . . . I read every label intently.  I am not feeling good, at all.  My lower back, hips, neck and head are aching badly.  Just need an answer too.  I do believe whatever is going on is affected by stress.  We are moving to another city and it has about put me in bed. . . just have to deal with it until this report is back.  Dr office called today . . . report still not in.   :rolleyes: 

 

Hang in there, get back on your gluten-free diet and call your doctor about increasing your dose of Dapsone, if needed.  Good Luck!

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I have questions that I believe only people using Dapsone can answer.  I am on 75 mg Dapsone daily.  I started Dapsone and a gluten free and low iodine diet on 10/20/2012.

 

  • Do you have new outbreaks while on Dapsone?not any more

     

  • Do you feel small bumps under your skin that do not break open?I get water filled blisters that really itch.

     

  • If you eat gluten, do you breakout? Not while taking my 100mgs.of dapsone,I've been taking it for 5 yrs.

     

  • Do you still have episodes of intense itching?I've tried going off of dapsone,within 5 ddays I break out with many blisters that itch,and i'm on a gluten free diet.

     

  • How long did it take for your open lesions to heal? They take a long time because I open them up,that seems to help with the itching.

 

If you have or are taking Dapsone, please respond.  I know every person may have different results but I really have concerns and maybe some answers will help me.

 

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I was diagnosed with DH seven years ago. I have taken dapsone since. All of my skin issues are healed while increasing my dosage to 100mg. Any Lower dosage does not work. Topical dapsone does not work. I am now having severe blood problems. I knew of the side effects. I now have low blood platelets, low rbc count, low hemoglobin . Dapsone is a powerful drug and has zapped my energy. Is there a substitute drug for dapsone. Following a GLUTTEN free diet with my work schedule is virtually impossible.

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Dapsone will destroy the blood. I have the same effects as you and need 100mg of dapsone daily to control my DH . after seven years of dapsone my rbc is low, my hemoglobin is low, my blood platelets are low.dapsone is a powerful drug and if you are having relations to it ... Stop the medication.

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RFJ, have you been eating gluten all along while taking Dapsone? You say it's impossible to eat gluten-free with your work schedule. How so? Do you realize that every time you eat gluten your villi are being damaged among other things? I'm not honking on you; I just want you to understand what you risk & maybe we can help you figure out how to eat gluten-free with your work schedule.

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I was diagnosed with DH seven years ago. I have taken dapsone since. All of my skin issues are healed while increasing my dosage to 100mg. Any Lower dosage does not work. Topical dapsone does not work. I am now having severe blood problems. I knew of the side effects. I now have low blood platelets, low rbc count, low hemoglobin . Dapsone is a powerful drug and has zapped my energy. Is there a substitute drug for dapsone. Following a GLUTTEN free diet with my work schedule is virtually impossible.

Dear RFJ

 

I am curious to know why a gluten-free diet is impossible for you?

 

Just curious.  

 

How can we help?

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I have been on Dapsone for many years, and once I got the gluten out of my system, my maintenance dose is 25 mg as needed.  This means I don't have to take it at all unless I have an outbreak.  When I diligently keep gluten out of my diet, I have no outbreaks.  In my opinion, it's easier to take the time to read all food labels and be careful when eating out, than it is to suffer the pain of both Celiac AND DH!  The Dr. warned me that the longer I am gluten-free, the more sensitive my system will become, and I've found that to be true.  So, I'm extremely cautious of all that goes into my mouth.  I know it's hard, but so worth the effort!  

 

When an outbreak is imminent, my mouth and elbows begin to itch, and soon I'm breaking out in blisters and cold sores.  My latest episode came on after eating bars that were clearly labeled Gluten Free.  So if I can get tripped up by a food labeled gluten-free, anyone can.  That's when I get the Dapsone out, take it twice a day, and it takes a good week for all to clear up.  This is not a condition to be taken lightly.  Close but not on target won't get it.  A very small amout of gluten will send my system into a spin. To be blunt about it, once you suffer enough, you'll take the time for due diligence.  There are no magic pills, no silver bullet.     

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Kaylu, how long have you been gluten free? More to the point --- how long did it take to get "the gluten out of your system"? I'm still on the journey myself & it helps me to know how long others have dealt with it.

Thanks,

Squirmy

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Hello to all that have responded to my original message.  Just an update on my condition.

 

I was in ER around the end of May and the ER doctor was quite concerned that I had been broken out for so many months without a diagnosis.  He called my medical group and did the ball ever start bouncing!  My PCP called and wanted to see me the next day.  My Dermatology office knew about the ER visit and what a change in trying to diagnosis me.  I've often wondered just who this ER doctor is/was. . . .he sure caused a stir, in my case.

 

I had 2 new biopsies (please excuse if I'm repeating)  one was taken for DIF (Direct Immunofluorescence Examination.  This came back with IGG-Speckled Deposits in Keratinocytic Nuclei which suggest a connective tissue disease, Lupus erythermalosus in particular.  I was also told they felt I had more than one auto-immune disorder and felt I could still have Celiac DH or possibly Non Hodgkins Lymphoma skin cancer.  ** please excuse my spelling.  My eye glasses are in the shop to be repaired **

 

I am due to see the Oncologist, Dermatologist, Rheumatologist and my PCP (Int Med) this coming week.  I stopped taking Dapsone in June of this year and the doctors feel I developed an allergy to it.  It did not affect my blood counts but the rash became so intense and so much worse that I knew something was wrong.  I am still gluten free and this past month the rash begin to heal and I thought finally I had relief.  Not so . . . I had a few bites of gluten foods and in the past week have a renewed rash on my belly and back.  Now, I know I had gluten but the doctors think this is Lupus. . . who knows?  The Dermatologist tells me this is systemic Lupus and the Rheumatologist feels it is skin Lupus with a big MAYBE.  He doesn't think the rash looks like Lupus, at all. . . well, maybe the ones on the back could be Lupus . . . (I'm quoting him)  LOL   I have to just shake my head, I don't know what to believe.  He told me the 'mushy' lesions were like Lupus but the not the other ones.  Sound familiar?  DH can present with different types of lesions and I know I've consumed gluten via bread, chips and a few bites of a delicious chocolate cake.  Maybe I should schedule an EGD for next week?  

So, back to my totally gluten free diet and by the way, each of my doctors asked me to continue eating gluten-free as the 55 + lbs I've lost is such an improvement for me.   I have been off balance with an unstable gait so they ordered a cane for safety.  I wanted to log on and post.  I have moved to another city, my laptop bit the dust and I'm here at the local library today.  Hope to have a new computer next month.   :rolleyes: 

 

Hang in there my comrades of the rash!  I can only say I believe my gluten-free diet is the answer . . .  

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Kaylu, how long have you been gluten free? More to the point --- how long did it take to get "the gluten out of your system"? I'm still on the journey myself & it helps me to know how long others have dealt with it.

Thanks,

Squirmy

 

 

Squirmy, I went gluten-free on Oct. 20, 2012 and although I still have some rash, it is sooooo much better.  I was bad and had a very small piece of cake, a couple bites of bread and crackers.  I had a renewed outbreak just in the past 10 days but it is not as horrible as when I first broke out in Feb of 2012.

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Dapsone will destroy the blood. I have the same effects as you and need 100mg of dapsone daily to control my DH . after seven years of dapsone my rbc is low, my hemoglobin is low, my blood platelets are low.dapsone is a powerful drug and if you are having relations to it ... Stop the medication.

 

 

I am so sorry the Dapsone has made you sick.  Were they taking blood draws every month?  My doctor was following that plan but we just didn't realize I had developed an allergy.  My blood counts were okay each month.

 

Once the Dapsone was out of my system, I saw a huge improvement in my rash.  I'm assuming the gluten-free diet was working for me.  

 

I hope you are eating gluten-free?  

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I was diagnosed with DH seven years ago. I have taken dapsone since. All of my skin issues are healed while increasing my dosage to 100mg. Any Lower dosage does not work. Topical dapsone does not work. I am now having severe blood problems. I knew of the side effects. I now have low blood platelets, low rbc count, low hemoglobin . Dapsone is a powerful drug and has zapped my energy. Is there a substitute drug for dapsone. Following a GLUTTEN free diet with my work schedule is virtually impossible.

Hmmmm, just seeing your remark about not being able to eat gluten-free, due to your work schedule.

 

Here is what I did and maybe you will be able to sit down and figure out a workable plan.

 

  1. I drink a gluten free meal replacement each morning.  Provide me with nutrients and is quick and easy.
  2. Have a salad for lunch with gluten-free dressing
  3. Vegetables and low fat protein fresh meat for my evening meal / many times I eat another salad.

    Here are some tips to help with food choices for a busy person.

     

  4. I buy a pre-made salad at Wal-Mart or other stores that have them.  It is made fresh daily and has just the right amount of veggies, grilled chicken, salad dressing, etc.  Gluten free and the cost is below $4.00.
  5. I buy either canned gluten-free chicken or vac packed chicken to add to my salad or use as chicken soup.
  6. There is gluten-free pasta available that doesn't take long to prepare.  Add chicken and marinara for a good Italian meal.

I've had some hectic work schedules in the past and can understand your situation.  Honestly, I would make ANY type of change needed to be free of this rash and if my food intake will solved the problem . . . . step back and see me make the changes!

 

Good luck! 

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Diagnosed about 5 years ago. 100mg Dapsone for 6 months or so really did the trick. I stopped because of the med power and broke out again. Sooo, another 6 months on the 100 and then I tapered to 50 for 6 months and all was good. Until I wasn't good!  went to Europe a tear ago next week (I'm in the U.S.) and went off plan. Figured it was a last trip for me so what the heck. Broke out a few weeks later of course. My dilemma now is that no one seems able to fill my prescription. Is there a substitute of any kind?

 

Oh, more to the original question, I took about 16 months to shed it the first time and was very much gluten-free the whole time. Right now I'm approaching a year. I had a doc appt this week so stopped for two days to see and popped out all over so I'm not yet clean. Like I said my issue right now is getting refills!

 

Good Luck!

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Diagnosed about 5 years ago. 100mg Dapsone for 6 months or so really did the trick. I stopped because of the med power and broke out again. Sooo, another 6 months on the 100 and then I tapered to 50 for 6 months and all was good. Until I wasn't good!  went to Europe a tear ago next week (I'm in the U.S.) and went off plan. Figured it was a last trip for me so what the heck. Broke out a few weeks later of course. My dilemma now is that no one seems able to fill my prescription. Is there a substitute of any kind?

 

Oh, more to the original question, I took about 16 months to shed it the first time and was very much gluten-free the whole time. Right now I'm approaching a year. I had a doc appt this week so stopped for two days to see and popped out all over so I'm not yet clean. Like I said my issue right now is getting refills!

 

Good Luck!

 

I never had a problem having the prescription filled.  I use Walgreen's pharmacy, here in Florida.  They have had to order it a couple of times but it was always there the next day.  No substitute that I know of but one of my doctor's mentioned they can use another drug.  (didn't work as well)  Check with your doctor about that.

 

You may need to order online and have Dapsone shipped to you.  Good luck. 

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This is my first post and don't mean to hijack this thread, but I have asked my dermatologist to prescribe dapsone as an aid in diagnosis and treating a migrating and moderately itchy rash that I have been dealing with for approx 3 months. It is my understanding that DH rashes are intensely itchy, but mine is a 4 on a 10 point scale. I have been trying to be gluten-free with the occasional cheat ...and when steroid creams etc haven't worked I asked for bloodwork and biopsies.. The results were negative for gluten issues, but my research has convinced me that avoiding gluten for a while can then lead to false negatives.

So.my dermatologist is willing to see if dapsone clears the rashes (back, elbows that went away and then returned, wrists, groin) but is extremely cautious about dapsone's affect on RBC's and causing pernicious anemia. Perhaps my questions are beyond the scope of this site, but I wondered:

1. Were members taking dapsone checked for G6pD and CBC before starting a dapsone regime and was the dosage increase a little each week after recheck lab work. My dermatologist is planning on initial dosage 25 mg 4 times daily for a week and increase 25mg each week until max of 100mg qid after weekly labs are run.

2. Are all of DH sufferers rashes super itchy? The only reason I think I'm not DH is because the persistent rashes that don't respond to anything are not super itchy. My itchiness is kind of similar to how you feel after a haircut and the cut hair that falls into the neck/collar area bugs you a lot.

3. I have tried to note what foods make me break out and I believe salt and dairy contribute and I realize that is consistent with DH.

4. Finally....whew!...if it isn't DH....can foods and latex (latex was positive on patch test) cause excema type rashes that come and go.

I apologize for the lengthy and rambling post. I have lurked on this site......and as I got more frustrated..the more I needed to reach out. Thanks!

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This is my first post and don't mean to hijack this thread, but I have asked my dermatologist to prescribe dapsone as an aid in diagnosis and treating a migrating and moderately itchy rash that I have been dealing with for approx 3 months. It is my understanding that DH rashes are intensely itchy, but mine is a 4 on a 10 point scale. I have been trying to be gluten-free with the occasional cheat ...and when steroid creams etc haven't worked I asked for bloodwork and biopsies.. The results were negative for gluten issues, but my research has convinced me that avoiding gluten for a while can then lead to false negatives.

So.my dermatologist is willing to see if dapsone clears the rashes (back, elbows that went away and then returned, wrists, groin) but is extremely cautious about dapsone's affect on RBC's and causing pernicious anemia. Perhaps my questions are beyond the scope of this site, but I wondered:

1. Were members taking dapsone checked for G6pD and CBC before starting a dapsone regime and was the dosage increase a little each week after recheck lab work. My dermatologist is planning on initial dosage 25 mg 4 times daily for a week and increase 25mg each week until max of 100mg qid after weekly labs are run.

2. Are all of DH sufferers rashes super itchy? The only reason I think I'm not DH is because the persistent rashes that don't respond to anything are not super itchy. My itchiness is kind of similar to how you feel after a haircut and the cut hair that falls into the neck/collar area bugs you a lot.

3. I have tried to note what foods make me break out and I believe salt and dairy contribute and I realize that is consistent with DH.

4. Finally....whew!...if it isn't DH....can foods and latex (latex was positive on patch test) cause excema type rashes that come and go.

I apologize for the lengthy and rambling post. I have lurked on this site......and as I got more frustrated..the more I needed to reach out. Thanks!

 

 

  • I had labs before my PCP ordered Dapsone and she ordered labs each month after starting the drug. 
  • I took .25 twice a day = 50
  • They then prescribed x 3 = 75 thinking I wasn't on a high enough dosage.
  • I took x 4 a day = 100 and I became so sick, temp and fatigue that it was certain part of my rash was an allergic reaction.
  • I was allergic to sulfa drugs and Dapsone is sulfa based, cannot take it now
  • My rash has had amber colored fluid and other lesions are not blistered
  • The healed areas are rough,  purple or dark red in color
  • The last biopsy pointed to Lupus but my doctors do not agree on that diagnosis
  • I have experimented by eating gluten and each time I have an outbreak either of new lesions or renewed old ones.
  • These lesions are horribly itchy like a 10 out of 10 , you scratch until they bleed and they still itch.
  • I feel a stinging sensation and once scratched the area burns like a sunburn feels.
  • I am currently taking another drug that is also used for DH and/or Malaria.  Some relief but still have the rash.

I wish you the best in determining what your rash is . . . .

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 I'm a new member and totally frustrated with Dapsone which has done absolutely nothing for my autoimmune skin disease.  This is a condition where the white blood cells attack the skin, and it's been on-going for 6 years.  Only 1 in 2,000 have this rare disease so zero research has been done unfortunately.  My dermatologist put me on a stronger dose which merely worsened it.  So back to the drawing board of what to do.  Redirecting the white blood cells must be an impossible task to figure out, but in this age of technology surely some doctor, chemist, etc., could come up with a solution?

I've read where many people become antibiotic resistant and this may have happened to me.  I'm sick to death of my problematic skin, and any suggestions would be helpful.

 

 

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@LouiseBea

Welcome!  Has celiac disease (dermatitis herpetiformis, skin version) been ruled out?  DH treatment requires a life-long gluten free diet.  

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Posted (edited)

6 hours ago, LouiseBea said:

 I'm a new member and totally frustrated with Dapsone which has done absolutely nothing for my autoimmune skin disease.  This is a condition where the white blood cells attack the skin, and it's been on-going for 6 years.  Only 1 in 2,000 have this rare disease so zero research has been done unfortunately.  My dermatologist put me on a stronger dose which merely worsened it.  So back to the drawing board of what to do.  Redirecting the white blood cells must be an impossible task to figure out, but in this age of technology surely some doctor, chemist, etc., could come up with a solution?

I've read where many people become antibiotic resistant and this may have happened to me.  I'm sick to death of my problematic skin, and any suggestions would be helpful.

 

 

Actually, there are Celiac centers, such as the Univ of Chicago, that research DH.  I think something recent came out about idodine and dh.  Let me look.  Of course, none of this will work if you aren't 100% gluten free.

 

here you go - 

https://celiac.org/blog/2015/10/dermatitis-herpetiformis-and-iodine-exposure/

I am guessing that there are more poeple with dH than 1 in 2000.

Edited by kareng
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