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Does Dapsone Help To Stop Itching?

bacon

By bacon
in Dermatitis Herpetiformis

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bacon Newbie
bacon
Posted

undiagnosed DH. Symptoms have gone off the scale in the last 6 weeks, blisters on my lower back, buttocks, inside of thighs, inside of ankles, elbows, scalp. im as itchy as HELL :( I cannot stop scratching. now taking sleeping pills to get some rest. affecting social, sports, sex and professional life and is slowly wrecking my quality of life. Im ripping myself to peices here!

seeing dermatologist for the 1st time in a fortnight. (so i am still eating gluten)

Will Dapsone really clear up my skin within days of starting taking it? Please say it will cos I want this to be over. I looking forward to starting a strict gluten free life to be away from this nightmare as soon as I am told i can commence the diet.

any thoughts gratefully received

Bacon in Wales, UK

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nasalady Contributor
nasalady
Posted
undiagnosed DH. Symptoms have gone off the scale in the last 6 weeks, blisters on my lower back, buttocks, inside of thighs, inside of ankles, elbows, scalp. im as itchy as HELL :( I cannot stop scratching. now taking sleeping pills to get some rest. affecting social, sports, sex and professional life and is slowly wrecking my quality of life. Im ripping myself to peices here!

seeing dermatologist for the 1st time in a fortnight. (so i am still eating gluten)

Will Dapsone really clear up my skin within days of starting taking it? Please say it will cos I want this to be over. I looking forward to starting a strict gluten free life to be away from this nightmare as soon as I am told i can commence the diet.

any thoughts gratefully received

Bacon in Wales, UK

Hi Bacon,

My husband says that in his experience, although Dapsone helped his DH clear up more quickly than it was improving on it's own, quickly is a relative term. He has had DH since February....most of the worst patches have cleared up, but elbows, knees, and buttocks continue to have smaller eruptions from time to time. Dapsone did help the itching, although he also uses topical steroids.

Our whole family is on the gluten free diet.

We've heard from some here on this site that it can take many months to be completely free of DH; the key is being strictly gluten free. There are lots of people who won't take Dapsone because of side effects. My husband took it for a number of weeks, then stopped taking it because it made him feel dizzy and weak. He just started taking Dapsone again tonight, because of patches of DH on his knees that are bothering him.

Good luck!

JoAnn

nasalady Contributor
nasalady
Posted

P.S. Welcome to the board! :) Hope you start feeling better soon, whether you decide to take Dapsone or not!

bacon Newbie
bacon
Posted
  • Author

Thanks for the advice JoAnn. How long in your experience does it take for the gluten free diet to start to have an impact? Ive read that it can take a long time for the damage in the gut to heal before things start getting back to normal (6months to 2 years). (In the meantime Dapsone does some of the hard work).

So glad ive found this forum :P

captaincrab55 Collaborator
captaincrab55
Posted
Will Dapsone really clear up my skin within days of starting taking it? Please say it will cos I want this to be over. I looking forward to starting a strict gluten free life to be away from this nightmare as soon as I am told i can commence the diet.

any thoughts gratefully received

Bacon in Wales, UK

IMO, Dapsone is a miracle drug.. The water blisters were gone in less then 2 weeks and the itch was relieved quite a bit in 2 days.. The Dermatologist did prescribe FLUOCINONIDE 0.05%, but it can only be used twice a day for 2 weeks out of the month.. Keep in mind that I went Gluten Free as soon as the biopsy results were in that I had DH.. It just happened to work out that I had an appointment with my Dermatologist that same day and blood lab the next day.. No Daspone until I had a blood lab and it was reviewed by my Dr.. The lab report was faxed to the Dr and reviewed... Blood lab also showed 4 High readings, no doubt that I had celiac disease. Dr then called in a prescription of Dapsone 25MG in to the Pharmacy.. It was blood labs weekly for 4 weeks, now it's labs every 4 weeks. That will change to 6 months and yearly if they continue to be OK.

Keep in mind that some people can't take Daspone....

bacon Newbie
bacon
Posted
  • Author

thanks for the benefit of your experience captaincrab55.

I have an appointment with the dermatologist on the 27th August following first referral from Family Doctor / General Practincioner (GP).

GP ordered a standard initial blood test, which came back normal.

Seeing consultant dermatologist in private hospital (thank you private medical cover through work!) on 27th August.

I havent a clue what to expect on 27th? Will the Dermatologist prescibe Dapsone without skin biopsy? Will she be able to do biopsy right there?

What sort of timeline would be typical for me to get the hell off Gluten and onto Dapsone??

captaincrab55 Collaborator
captaincrab55
Posted
What sort of timeline would be typical for me to get the hell off Gluten and onto Dapsone??

My Dermatologist did 2 tests, liquid from the water blister and a tissue sample. The results for the liquid took a week, but the biopsy for DH took 2 weeks.. It was another 4 days (weekend involved) for the blood lab results, before I could start the Dapsone. Keep in mind that this was the 4th Dermatolgist that I've been to over the years.. I was sent to him by my GP...

BTW, Make sure your Dermatologist has the Blood Lab results from your GP...

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nasalady Contributor
nasalady
Posted
Thanks for the advice JoAnn. How long in your experience does it take for the gluten free diet to start to have an impact? Ive read that it can take a long time for the damage in the gut to heal before things start getting back to normal (6months to 2 years). (In the meantime Dapsone does some of the hard work).

So glad ive found this forum :P

Hi Bacon,

I'm glad you found it too! :)

Since everyone in my household has a gluten problem, I'll give you all of our experiences.

Me: multiple autoimmune diseases, fibromyalgia, no DH (at least not lately, I had an itchy blistery rash in 2007 which may have been DH). I went gluten free in November 2008 when diagnosed with celiac disease. Within days, my gastric symptoms had improved. My fatigue, headaches, hand tremors and vertigo were gone within a week. The only symptoms that remained at that point were the worst of my fibro and rheumatoid arthritis symptoms, mainly muscle spasms, pain in hands and feet, generalized all-over pain (allodynia), and severe back pain when standing or walking. I have now been on the gluten free diet for 9 months. The muscle spasms are 90% gone. The pain in hands and feet is now only occasionally present. The allodynia and back pain are unchanged. Some have told me that it took them a full two years on the gluten free diet to see all issues (especially fibro) go into remission. When I'm glutened I get a headache, vertigo, and gastric symptoms within 12 - 24 hours.

My husband: "silent" celiac (meaning he had no symptoms until the DH appeared). His DH showed up in February. With the Dapsone and the gluten free diet over 6+ months he has come close to being rid of the DH, but there have been several flare-ups probably due to hidden gluten. He's having a small flare up now...thankfully each episode seems to be milder than the last.

3-year-old daughter: very small for her age. Diagnosed Failure to Thrive. After beginning the gluten free diet she gained 2 pounds in 6 months, which is a lot for her! Also, her skin conditions (eczema and keratosis pilaris) have improved significantly....eczema was much better in less than a month, KP in about 3 or 4 months.

4-year-old son: Keratosis pilaris improved within 4 months on gluten free diet.

Again, good luck with everything, and as captaincrab55 pointed out, if you do use Dapsone, you must be willing to get lots of bloodwork done so they can monitor your levels. Dapsone can cause hematological problems.

Take care,

JoAnn

P.S. My husband's dermatologist prescribed Dapsone without the benefit of a positive skin biopsy, after all of the other meds he tried didn't work. He pointed out that his blisters were turning dark purple as they healed, which is classic DH behavior, and the derm shrugged his shoulders and said OK, you can try Dapsone. I've been told that positive response to Dapsone used to be used as one criterion for diagnosis of DH.

bacon Newbie
bacon
Posted
  • Author

Blood lab test results are back and are showing none of the telltale signs of DH/gluten intolerance. :huh: part of me is pleased and part of me is fed up.

any common experiences?

bacon

nasalady Contributor
nasalady
Posted
Blood lab test results are back and are showing none of the telltale signs of DH/gluten intolerance. :huh: part of me is pleased and part of me is fed up.

any common experiences?

bacon

False negatives in bloodwork and intestinal biopsies are quite common, unfortunately. I read somewhere that false negatives are more common in those with DH.

Will you still be seeing the dermatologist on 27 Aug? The skin biopsy should tell you something.

But it all else fails, you could always go gluten free anyway. Let your body tell you if you have celiac disease or not. If you get better on the gluten free diet, and then worse when you eat gluten again, you know.

Again, good luck!

JoAnn

bacon Newbie
bacon
Posted
  • Author
False negatives in bloodwork and intestinal biopsies are quite common, unfortunately. I read somewhere that false negatives are more common in those with DH.

Will you still be seeing the dermatologist on 27 Aug? The skin biopsy should tell you something.

But it all else fails, you could always go gluten free anyway. Let your body tell you if you have celiac disease or not. If you get better on the gluten free diet, and then worse when you eat gluten again, you know.

Again, good luck!

JoAnn

Hi JoAnn,

Yes, still going to see dermatologist on 27th (8 more sleeps!). Hoping the skin biopsy will confirm something that is treatable, whether its DH or not (although im sure it is).

I think that rather than wait another 4 weeks or so for an intestinal biopsy, I'll probably go gluten free for 6 months to see if any differences are noticable.

I know Dapsone might not suit me, but Im dying to get on something that might provide some relief from this itching! :angry: (Im currently sat outside 10pm british summer time getting some cool air on my skin!!)

Ive just had a veery interesting 48 hours having a very strange reaction to those sleeping pills!! :o They turned me into a complete space cadet. depressed, irritable, dizzy, headache, fatigue, lethagy, absent minded. I was completely off it. Not taking those nasty things again!!

Fingers crossed. Sounds like you have your family's needs well organised!

bacon

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