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Dapsone

Di2011

By Di2011
in Dermatitis Herpetiformis

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Di2011 Enthusiast
Di2011
Posted

I've had a rotten afternoon/evening.

Lots of new eruptions. Itching all over.

I really thought I had a hold on my gluten intake (kitchen/bathroom etc) but today I've had the worst day of the past couple of months. I am so so so so sick of itching. I hate the conversation I had to have with my son today about washing his hands/face etc after coming home from school. What 9y/o old needs that kind of guilt. The DH is so obvious to him that I can't hide any of it (skin or possible contamination).

My brain and sensibility is telling me to go down the Dapsone road despite my reservations.

Can anyone give me personal experience (((good and bad))) ???

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ravenwoodglass Mentor
ravenwoodglass
Posted

Are you avoiding iodine in food and supplements as well as toiletries? You don't need iodine to have a DH outbreak but it does keep the antibodies active in the skin.

Personally I wouldn't go the Dapsone route. It is a pretty toxic med. If you do decide to use it for the short term make sure the doctor does regular liver panels on you and does one before you start taking it.

lovegrov Collaborator
lovegrov
Posted

I took it for 20 years with no apparent side effects. Your doctor needs to monitor at first with blood and liver tests and you should be looking to take the lowest amount possible that still works. Yes, it can have toxic effects, BUT the severe reactions are rare and are reversible as long as you are being monitored. When I first started I was taking too much and my blood counts dropped, but they came back immediately after we lowered the dose. Of course I am not a doctor so obviously you should talk with your physician.

richard

eatmeat4good Enthusiast
eatmeat4good
Posted

I took it for two weeks and loved it. It really worked. But the 15th day I broke out from head to toe with a bright red pinpoint-dotted rash all over. My legs were just completely covered. Of course I immediately stopped taking it. It took a long time for that rash to subside...but it wasn't itchy like DH. Of course the DH came back...and I had to avoid Iodine and Gluten strictly...even cross contamination would and will result in weeks of DH outbreak and symptoms. As for your son... Washing up after school is a good idea anyway! It doesn't have to have guilt associated with it. I wish Dapsone had worked for me but it didn't. I was miserable so that is why I tried it in spite of the risks. There is also a cream form, but I didn't get to try it. Apparently if you can't tolerate Dapsone...it means both pill and cream form. :) Oh well, I tried.

eatmeat4good Enthusiast
eatmeat4good
Posted

Open Original Shared Link

Here is a link about how to limit iodine. The diet still allows 50 mcg. of iodine, therefore it is a "low", not "no" iodine diet. But to heal DH and get the antibodies to stop reacting some people need to restrict iodine. Spinach, Potato skins, asparagus, and eggs were hidden sources of iodine that I had to address. The diet is temporary, until your lesions heal, but it is really good information about "How To" on avoiding excess iodine that might be aggravating your DH.

squirmingitch Veteran
squirmingitch
Posted

Dapsone is not the only choice you have. There are others. While Dapsone is the drug of choice & by all accounts results are rapid; there are alternate drugs which do not have quite the danger or side effects as dapsone. I have been looking into this myself & here is a Wiki link. go down to where it says "Treatment" & the other drugs are listed there.

Open Original Shared Link

Personally, I have rejected the colchicine and am looking at the lymecycline. I'm not through going thorough the list but will check all the alternatives out.

I am so sorry to hear this is happening to you. I know you had said in another thread that you had great results going off iodine after being 2 mo. gluten free & that gave me great hope. And I have embarked on going iodine free. I'm having a lot of trouble, getting depressed with seemingly so few choices of things to eat. Getting sick of saying to my husband --- "no, I can't eat that, no, I can't have that, no, that has gluten, no, that has iodine, no, no, no, no, no,".

I had been off the steroid for 10 days & then the blisters began coming back rampantly. I tried to wait it out but couldn't stand the never ending ITCH. I went back on the steroid. Had hopes I would be able to give them up very soon as I get farther down the gluten free road as well as doing the iodine free for a short time.

squirmingitch Veteran
squirmingitch
Posted

OOPS! Diandliam it seems I got you mixed up with pricklypear who posted having results after going iodine free for 3 days. Sorry.

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Di2011 Enthusiast
Di2011
Posted
  • Author

Thanks everyone. I have been careful to avoid any processed foods but for some reason yesterday was particularly stingy itch and new blisters ((I still don't know what to call the little blighters :huh: ))

The Cookbook will be so useful. I am getting sick of rice, rice noodles, steak, veg/salad. But I know it was just a bad day and today I have been very determined to not let 'me' get me down. :) And I really really don't want to do drugs. The gluten seems like enough toxins in my system.

Given that I now only have 'bad' days every so often I should and am determined to consider myself lucky.

Thankyou everyone. I don't know what I would have done, over the past months, if it wasn't for some kind words/thoughts from this forums members.

pricklypear1971 Community Regular
pricklypear1971
Posted

Thanks everyone. I have been careful to avoid any processed foods but for some reason yesterday was particularly stingy itch and new blisters ((I still don't know what to call the little blighters :huh: ))

The Cookbook will be so useful. I am getting sick of rice, rice noodles, steak, veg/salad. But I know it was just a bad day and today I have been very determined to not let 'me' get me down. :) And I really really don't want to do drugs. The gluten seems like enough toxins in my system.

Given that I now only have 'bad' days every so often I should and am determined to consider myself lucky.

Thankyou everyone. I don't know what I would have done, over the past months, if it wasn't for some kind words/thoughts from this forums members.

Sorry you're so itchy.

Yes, I had results in 3 days - the sores started healing and no new ones popped up, I had also been gluten-free for 2 months prior...I'm sure that helped.

I'm very happy low iodine worked for me since most meds trigger horrible reactions in me.

I still have 2 spots that aren't totally healed and one spot on my belly that gets red if I get into something. But so far no more nests of red bubbles oozing liquid under my arms. I can go out in public and function so I'm thrilled.

  • 1 month later...
lil'chefy Apprentice
lil'chefy
Posted

I've had a rotten afternoon/evening.

Lots of new eruptions. Itching all over.

I really thought I had a hold on my gluten intake (kitchen/bathroom etc) but today I've had the worst day of the past couple of months. I am so so so so sick of itching. I hate the conversation I had to have with my son today about washing his hands/face etc after coming home from school. What 9y/o old needs that kind of guilt. The DH is so obvious to him that I can't hide any of it (skin or possible contamination).

My brain and sensibility is telling me to go down the Dapsone road despite my reservations.

Can anyone give me personal experience (((good and bad))) ???

I took Dapsone for 22 years. It made me a little tired at first, but cleared up my disease bumps over a months time period. I am not taking it anymore (6 mos,)and have been Gluten-Free for only about 48 hours. I no longer have DH symptoms, except for overly sensitive skin (itchy for no reason). Just don't go off the Gluten-Free diet while you are on it. Get yourself undr control, then go off of Dapsone. The smaller amounts didnt help me. I had to take 100 mg.

kmag Rookie
kmag
Posted

I tried dapsone 50mg daily this spring and it did nothing for my itch. I probably needed a higher dose, but the side effects at that dose were enough to make me stop taking it after one week.

Gluten free nine months now and still itchy with the occasional blister. I, too, am so bloody tired of the itching and the scratching and the itching and the scratching. I want my skin to be normal again :(

In one week, dapsone lowered my iron significantly, gave me insomnia, peripheral neuropathy and made me feel like a zombie. If it had done anything for the itch, I may have tolerated continuing with it, but it didn't.

You can always try it and see it it helps you. You sound like a good candidate for it and not everybody has yucky side effects.

lil'chefy Apprentice
lil'chefy
Posted

I tried dapsone 50mg daily this spring and it did nothing for my itch. I probably needed a higher dose, but the side effects at that dose were enough to make me stop taking it after one week.

Gluten free nine months now and still itchy with the occasional blister. I, too, am so bloody tired of the itching and the scratching and the itching and the scratching. I want my skin to be normal again :(

In one week, dapsone lowered my iron significantly, gave me insomnia, peripheral neuropathy and made me feel like a zombie. If it had done anything for the itch, I may have tolerated continuing with it, but it didn't.

You can always try it and see it it helps you. You sound like a good candidate for it and not everybody has yucky side effects.

Dapsone does not do anything for the itch, but if you religiously take it for 6 mos. it will heal your existing bumps and patches of DH. It sure did for me anyway.

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