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Dapsone ~ Members Taking Dapsone Please Respond.


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21 replies to this topic

#16 sisterlynr

 
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Posted 18 September 2013 - 01:18 PM

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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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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#17 sisterlynr

 
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Posted 18 September 2013 - 01:22 PM

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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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~


#18 sisterlynr

 
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Posted 18 September 2013 - 01:36 PM

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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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~


#19 FranDaMan

 
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Posted 19 September 2013 - 05:19 AM

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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DH outbreak November 2008
Biopsy confirmed January 2009
Gluten Free ever since!

#20 sisterlynr

 
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Posted 24 September 2013 - 11:21 AM

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. 


  • 0

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~


#21 Blaze422

 
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Posted 30 October 2013 - 06:49 AM

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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#22 sisterlynr

 
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Posted 18 November 2013 - 11:06 PM

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 . . . .


  • 0

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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