Dapsone Experiences? (from A Newbie)

[chestnut]

Okay, first off let me say what a miracle it is to find this site and these boards!

I've been a sufferer of DH ever since I was a child and it was always a sorrowful problem that's only now been "discovered" in my adulthood.

But at least now I know.

I've been reading a lot of stuff here about Dapsone. Obviously there's not one answer for everyone but I have a few questions before I pitch it to my doc.

1. How quickly does it work at stabilizing/decreasing outbreaks?

2. I know a gluten-free diet is the best way to go, but it sounds like a lot of you have eaten gluten (or been accidentally exposed to it) while taking Dapsone and have seen no outbreaks. Is Dapsone THAT powerful? (externally)

3. Is it expensive?

and finally...

4. Since these boards are anecdotal there are hundreds of different perspectives/experiences. The one thing I'm worried about is the common mention of dairy allergies. My doc has never mentioned that. Is DH associated with that in a high percentage or is that just a coincidence amongst some posters?

Sorry for the many questions (I'm primarily interested in the Dapsone answers) but I will deeply appreciate your replies before I see my doc.

I'm deeply aware of the possible side-effects and the need to monitor both kidney/liver levels.

Thanks!

[frenchiemama]

Dapsone didn't work for me. Not only did it not work, but it made me terribly sick and landed me on bedrest.

BUT the good news is that if you find that you can't take dapsone, there is an alternative. I take 500mg of tetracycline and 500mg of B3 twice a day and it controls any outbreaks that I might have.

[chestnut]

Dapsone didn't work for me. Not only did it not work, but it made me terribly sick and landed me on bedrest.

BUT the good news is that if you find that you can't take dapsone, there is an alternative. I take 500mg of tetracycline and 500mg of B3 twice a day and it controls any outbreaks that I might have.

I was on Erythromycin for a few years when another dermatologist originally thought it was a skin allergy and that worked pretty well. But I began cutting back to only one pill a day instead of 4 and the benefits aren't working any more.

So maybe the Dapsone isn't needed.

Erythromycin is pretty inexpensive. (I'll ask my doc for his recomendation, of course.)

Are you constantly on the Tetracycline or do you take it periodically?

[frenchiemama]

I took it constanty at first, because it can take months for the diet to clear up your skin. Now I take it only when I've had an accidental gluten ingestion.

[chestnut]

Thanks so much.

Will appreciate hearing from you Dapsoners too!

[teebs in WV]

I have been taking Dapsone for 2 months now - 25 mgs twice a day and it has helped soooooooo much! I still itch some, but nothing like I was, and also no outbreaks of blisters. I am also following a gluten-free diet. Good luck - I hope it works for you too!

[chestnut]

I have been taking Dapsone for 2 months now - 25 mgs twice a day and it has helped soooooooo much! I still itch some, but nothing like I was, and also no outbreaks of blisters. I am also following a gluten-free diet. Good luck - I hope it works for you too!

That is AWESOME to hear! I've had severe outbreaks since I was a small child (my mother actually has an entry in my babybook detailing, "the really bad rash you have all over!") and if there's a drug to help (along with the diet) it seems like a godsend.

Hopefully my dermatologist is into it. I hope he will be since he was the one who diagnosed the HD but he said something awhile back about being concerned with liver/kidney effects.

Here's hoping...

Those of you who take it...If you take it while in the midst of an outbreak, does it quicken recovery time?

And, is it pricey?

I'll pay a million dollars if I have to but I'm hoping, since the drug is 100 years old, that it might be pretty affordable.

[teebs in WV]

I have not had an outbreak since I started taking Dapsone. I had a terrible outbreak on my arms, legs, and ankles that started clearing within 48 hours of starting Dapsone. Sorry, but I do not know how much the cost is as my medical insurance pays part of mine. I pay $16 USD. My dermatologist is who initially diagnosed me. I then was referred to a GI who did a biopsy and confirmed the diagnosis. My derm also talked to me about the possibilities of liver damage, but we are going to monitor that with frequent bloodwork. Good luck to you!

[lovegrov]

I took dapsone for 20 years and it worked perfectly, even when I was eating gluten. For me it stopped the itching and blisters within a day or two. I did not, however, know about the connection to celiac disease so didn't go gluten-free until celiac landed me in the hospital.

Dapsone would be good while you go gluten-free and until you heal, but your goal still should be gluten free.

richard

[chestnut]

I took dapsone for 20 years and it worked perfectly, even when I was eating gluten. For me it stopped the itching and blisters within a day or two. I did not, however, know about the connection to celiac disease so didn't go gluten-free until celiac landed me in the hospital.

Dapsone would be good while you go gluten-free and until you heal, but your goal still should be gluten free.

richard

Thanks, Richard.

I'm not looking for Dapsone to be a "free wheat card" I'm just curious about it's effects in regard to healing/stopping outbreaks due to accidentally exposures.

Thanks!

[rjh]

Okay, first off let me say what a miracle it is to find this site and these boards!

I've been a sufferer of DH ever since I was a child and it was always a sorrowful problem that's only now been "discovered" in my adulthood.

But at least now I know.

I've been reading a lot of stuff here about Dapsone. Obviously there's not one answer for everyone but I have a few questions before I pitch it to my doc.

1. How quickly does it work at stabilizing/decreasing outbreaks?

2. I know a gluten-free diet is the best way to go, but it sounds like a lot of you have eaten gluten (or been accidentally exposed to it) while taking Dapsone and have seen no outbreaks. Is Dapsone THAT powerful? (externally)

3. Is it expensive?

and finally...

4. Since these boards are anecdotal there are hundreds of different perspectives/experiences. The one thing I'm worried about is the common mention of dairy allergies. My doc has never mentioned that. Is DH associated with that in a high percentage or is that just a coincidence amongst some posters?

Sorry for the many questions (I'm primarily interested in the Dapsone answers) but I will deeply appreciate your replies before I see my doc.

I'm deeply aware of the possible side-effects and the need to monitor both kidney/liver levels.

Thanks!

[rjh]

Chestnut,

I've been on dapsone since Dec. 1990 and it has been a godsend. I have suffered from the itchy rash (dermititus herpitiformus sp?) since I was a teenager and doctors told me it was probably stress related and would suggest various over-the-counter topical creams which would do no good. When I turned 50 in 1990 I went for a physical exam which led to a gastrointerologist performing the biopsy that led to me being diagnosed with celiac sprue. He refered me to a dermatologist who biopsied some of my itchy spots and said I also had dh. He prescribed 25 mg dapsone and within months I was relieved of my itchy spots for the first time in my life. Several years later I started cutting the 25 mg tablets in half and taking half a tablet (12.5 mg) per day which has kept me from breaking out since then. I found out a few years ago that dapsone is the most prescribed Rx in the world which is the reason it is inexpensive.

The pharmacist made a mistake early on and had me taking 100 mg dapsone per day which did cause me problems that the doctor caught by looking at me and seeing I had blue lips and took another blood test which caused him to ask how much I was taking. Since I decreased to the lower dosage I have not had any breaking out.

And the doctor told me that if I eat out once a week or more I am almost certain to eat some contaminated food even if it is just cross contamination from being prepared along with gluten containing foods. But the dapsone keeps me from breaking out. Since I was being very careful about what I eat, I tried going off the dapsone but started breaking out after a few months so I resumed taking dapsone.

Hope this helps.

rjh

[Idahogirl]

I started on Dapsone immediately after being diagnosed with DH, and it cleared up right away. Miracle pill! I didn't alter my diet at all for many, many years and the dapsone was enough to suppress outbreaks. I did get to the point where my red blood cell count was so low that they could not increase the dosage even if needed (they started off with small dosage, worked up to 150 mg per day). I am now gluten free and since I'm pregnant, I can't take dapsone anymore, but I don't have any outbreaks at all. Occasionally, I'll have a little itchy spot but not a true outbreak.

"Free wheat card" LOL!!! That is funny. Before I understood about celiac, and before my pregnancy forced me to go gluten free, that's what it was to me. It was like my prayers had been answered. A pill a day takes all my problems away. Only I didn't realize there were still problems going on.

Dapsone is not expensive. I only paid a copay, but it seems like the full price of it was not outrageous like some medications. I've heard that the reason that dairy insensitivity is a problem with DH is that if you have it, you also have celiac, which ruins the villi in your small intestines, which are needed to produce *something* that processes dairy. Hence lactose intolerance is common for celiac/DH sufferers.

BTW, yes, Dapsone is that powerful! But it is also accompanied by frequent dr. appointments for monitoring (the derm. saying "so, how's it going?", then "alright, let's see you back in six weeks") and getting your blood drawn before every stinking appointment. I don't miss that part of it at all!

Lisa

[teebs in WV]

As I mentioned in a previous post, I have been on Dapsone since October (25 mg twice a day). It has helped tremendously. However, when I get glutened, I get a breakout within 24 hours. Not as bad as before going on Dapsone, but still extremely itchy and ugly none the less. I have a question for the Dapsone veterans - have you ever increased your dosage on your own? My derm said that I could but I haven't done it yet....but am very close due to my latest outbreak. If you have, how did you do it? If I have been taking 25mg twice a day, just up it to 3 times a day? I would really appreciate hearing some experiences. Thanks!

[Nickie]

I have had my rash since I was about 15 years old. (20 years) I went to numerous doctors none of them had any clue what my rash was. I would get the blood and clear blisters on my hands, very painful, could not even reach into my purse without pain. It was awful. And to repeatedly go to a doctor and a dermatologist and to have them have no idea what it was. I also started breaking out on my face as well, with acne and the little clear blisters that were DH. Finally I read an article in a magazine and on the third skin biopsy asked my dematologist to eliminate the possibility of it being DH. He did and even sent it back for a second opinion. Finally I knew what it was. It was a great feeling. I have already been on antibiotics for acne and he added the dapsone about a week ago, It is working great for me, I am not waking up istching myself and any of the break out I had before starting it is in the final stage of healing. THe only problem I have had with it is it has made me no hungry have to force myself to eat something everyday. I am hoping that, that will go away, definitely do not need to loose any weight. I have just had my bloodtest to check for celiac a week ago as well. The monday after my diagnoses of DH, just waiting for the results, but signed up here and am going to try the gluten-free diet no matter what the bloodtests reveal. I have had other symptoms as well so I do believe it is the gluten allergy. I am 35 and have already shown to be borderline osterpososis, that is enough for me. I appreciate all the information I have found out at this site and I am continually doing research. Thanks!!!

[lovegrov]

If you definitely have DH then you definitely have or will have celiac. Even the National Institutes of Health agrees with this. In fact, they say that if you have DH, you don't need any more tests for celiac, you just need to go gluten-free. There's an NIH consensus statement about this. But you need to keep taking the dapsone for several months to keep from breaking out.

richard

[Nickie]

If you definitely have DH then you definitely have or will have celiac. Even the National Institutes of Health agrees with this. In fact, they say that if you have DH, you don't need any more tests for celiac, you just need to go gluten-free. There's an NIH consensus statement about this. But you need to keep taking the dapsone for several months to keep from breaking out.

richard

See I have read all that, but even my doctor said that DH does not necessarily cause cleiac disease, but I told her that I want to get the tests done to be sure. I have learned through years of going to doctors you have to do your own research and go in there with your gloves on and prepared. HOw much Dapsone did you start out taking. Right now I am on 100mg a day for 3 months and then my dermatologist said we can lower it down to a lower dose to keep it under control. How long did it take you to get diagnosed, my doctors thought it was everything from ezcema, traumatic dermatitis, pustular psorasis you name it, tried everything till I read about DH in a magazine a month ago. I should get paid the big bucks. LOL

[lovegrov]

I'm just telling you what the top celiac experts in the country say. If you do have positive blood tests, the NIH says a biopsy is not necessary, since you've already been diagnosed with DH. In case you haven't read the actual consensus statement: Open Original Shared Link.

Anyway, my dermatologist diagnosed my DH 25 years just by looking at it. He knew immediately what it was. If yours didn't even think of DH, then she apparently might not know much about DH. Mine, however, didn't know the celiac connection 25 years ago, and so although he wisely urged me time and time again to go gluten-free, I refused, thinking it would be too hard.

I started out at 100 mg a day but blood tests showed that was negatively affecting my white blood cells. Eventually I ended up at 25 mg, and I almost never needed it daily. In the winter, I took it maybe once every three days. That's a very low dosage.

After 20 years on dapsone the internal celiac part finally caught up with me. I was hospitalized basically dying of malnutrition. Even then nobody made the DH-celiac connection, but my GI saw some celiac symptoms and decided to run the blood tests. I was in the hospital for 11 days and missed 10 weeks of work. It took 6-7 months to return to normal. Basically, I felt like I had the flu for months. It was awful. I was unusual in that my DH disappeared as soon as I went gluten-free; no dapsone needed. Most people need it for months after they go gluten-free.

My opinion? Go gluten-free. Don't take the chance.

richard

[Nickie]

I'm just telling you what the top celiac experts in the country say. If you do have positive blood tests, the NIH says a biopsy is not necessary, since you've already been diagnosed with DH. In case you haven't read the actual consensus statement: Open Original Shared Link.

Anyway, my dermatologist diagnosed my DH 25 years just by looking at it. He knew immediately what it was. If yours didn't even think of DH, then she apparently might not know much about DH. Mine, however, didn't know the celiac connection 25 years ago, and so although he wisely urged me time and time again to go gluten-free, I refused, thinking it would be too hard.

I started out at 100 mg a day but blood tests showed that was negatively affecting my white blood cells. Eventually I ended up at 25 mg, and I almost never needed it daily. In the winter, I took it maybe once every three days. That's a very low dosage.

After 20 years on dapsone the internal celiac part finally caught up with me. I was hospitalized basically dying of malnutrition. Even then nobody made the DH-celiac connection, but my GI saw some celiac symptoms and decided to run the blood tests. I was in the hospital for 11 days and missed 10 weeks of work. It took 6-7 months to return to normal. Basically, I felt like I had the flu for months. It was awful. I was unusual in that my DH disappeared as soon as I went gluten-free; no dapsone needed. Most people need it for months after they go gluten-free.

My opinion? Go gluten-free. Don't take the chance.

richard

Well, I am glad that I never experienced that although I do have a hard time gaining weight. Everyone gives me a hard time and I tell them I eat I eat LOL. I just got my blood test result, had to go in for a pulmonary test for my Asthma, she told me it was positive. Just makes me wonder for 20 years my body must have been doing battle with intself inside and out, with no one being the wiser. Now comes the fun part going gluten free. I will though for the benefits it does create, just going to be an adjustment. We will see how my blood test go on a 100mg a day. I am just happy because for the first time in 20 years I am not afraid to shake someones hand. Take Care!!!

[colorado kathy]

Well, I am glad that I never experienced that although I do have a hard time gaining weight. Everyone gives me a hard time and I tell them I eat I eat LOL. I just got my blood test result, had to go in for a pulmonary test for my Asthma, she told me it was positive. Just makes me wonder for 20 years my body must have been doing battle with intself inside and out, with no one being the wiser. Now comes the fun part going gluten free. I will though for the benefits it does create, just going to be an adjustment. We will see how my blood test go on a 100mg a day. I am just happy because for the first time in 20 years I am not afraid to shake someones hand. Take Care!!!

Although I was diagnosed w/DH several years ago, I chose not to take the Dapsone at that time - wasn't thrilled w/ the side effects. As an FYI, I started the gluten free diet about 8 weeks ago and within 1 week, I noticed that the intensity of the itching was decreased! That in itself is enough to make you continue w/the diet and not cheat! At this point, I continue to have a few areas that still break out (they were the worst areas anyhow), but the rash has significantly lessened and I'm starting to heal, and the itching is so much less. It's really been worth it. Plus it has helped some of the GI symptoms I was having, but pretty much blowing off as nothing. I really do feel better all over, so this thing really does affect you in so many ways. Good luck. I think the diet will continue to be a learning process for quite awhile.

[lovegrov]

I'm not advising anybody to take dapsone as I am not a doctor or a medical person, but if you check the literature, the worst side effects are very, very rare and can easily be monitored.

richard

[joanne3482]

I spent 2 years just being gluten free without the benefit of dapsone. Honestly, no matter how hard I tried (and I TRIED) I never cleared up fully. There were always blisters. When I moved to California and got good health insurance, that was the first thing I told my doctor. I want dapsone. He followed the rather rigorous protocol for ensuring that I was having no complications the first year I was on it (blood tests every week for the first month, every month for like 3 or 4 months and then every 6 months to eventually every year.). For some reason his book instructed to add pills up to 6/day so that clearing up happened and then drop pills until you get to a level the DH is under control. Six pills a day made me feel really bad I remember. I currently do 2 25mg pills/day. Sometimes I pop a 3rd one if I'm having problems breaking out again. Honestly, I don't know that I'd give it up. I like being rash free. I like not itching and the hell I was going through before I was diagnosed is not something I care to repeat.

Also, Dapsone is dirt cheap. I was paying less than 15 bucks a month for it without health insurance.

[Nickie]

The dapsone has worked great for me. Cleared up and healed except for legs which were really bad. RICHARD....after research I have found that if you have DH you will have celiac disease, hence the positive blood results. Still working on gluten free, living on a lot of veggies and fruit and boiled eggs, cheese haven't had bad reaction to those yet, I hope I don't.. But so far so good. For the initiator of this thread I have been on 100mg of Dapsone since Feb 27th. Works well.

[lovegrov]

Glad to hear of the improvement. You'll find there's a lot of stuff you can eat, at least from a gluten perspective. Meat is easy.

richard

[VegasCeliacBuckeye]

I have been on Dapsone for 9 years.

Started out around 100mg a day and now I am at 25 mg a day.

If I stop taking them, the blister will return - they always do -- guess I am unlucky that way (I have been gluten-free for 9 years also)...

It helps a lot though....the ony side effects are sensitive skin (to sunlight) and liver issues (but these only happen to folks who do not go on the gluten-free diet and/or take high levels of Dapsone a day)

I am not a doctor....FYI