How long did anyone with DH stay on Dapsone if that was the route they took?

It has been one year since my husband was diagnosed & put on Dapsone. One month ago he cut his dose down from 50mg to 25mg, unfortunately he has been itchy ever since & last night decided to go back to 50mg. I know we are all different but I am also struggling with it( as those of you that have read my ?????????? will now be aware of) & I need to know as much about the illness & affects it has on those of you that live with it as I can absorb. My husband has also been on an anti depressant for some time which is also scary. To be perfectly honest this site & the support I receive prevents me from going the same route, so thank you one & all so much.

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  • I have DH but have never been offered Dapsone, just been told to look at what is in my diet to set it off. There is usually something...Last summer it was really bad and I couldn't think what was causing it..my diet was fine. In late Autumn I realised what was the culprit...I live on a farm and my hubby has to dry the wheat in a huge dryer.(I avoid the grain sheds) and in the cooler air we noticed the wheat dust blowing around. I had spent all summer taking our dog for his walks going right past all of this and breathing it in. I changed my route, and he has now finished drying the wheat, and a couple of weeks ago my itching stopped. Maybe its worth having a very close look at his diet and environment to see if there is anything. Coeliac UK will say that inhaling wheat dust shouldn't do anything but it does. Another thing, many say that whiskey is ok to drink because it has been distilled. My DH was diagnosed the year I believed that and was drinking Baileys. It coincided with my annual check and my consultant just said 'We have a positive ID for DH....what have you been eating?' I mentioned the whiskey and he said I shouldn't be drinking it. I don't know if any of this is any help...I do have a steroid cream that I use if my DH plays up which does help.

    Why are you so worried about your husband being on an antidepressant? Is it helping him? My daughter went on some for supposedly a short time following the death of my father and for a couple of other issues but found that they helped her rather severe IBS so much that our GP has said she can stay on them for as long as she likes...they won't hurt her.

  • Hi Jillp

    Would you mind telling me what steriod cream you have used that has helped you please, as the ones I have been prescribed dont seem to help me very much, sometimes the spots seem to merge together as a raised area when I have used the creams and I am just wondering whether some are better than others.

    I havent been offically diagnosed with DH and I am waiting for a skin biopsy, I have taken Dapsone for a month and found that my skin completely cleared up. I hope you dont mind me bombarding you with lots of questions. I am on a strict GF diet as I have been diagnosed with CD but the spots are still appearing despite this, sometimes I feel that they are worse than before I was diagnosed however I dont get the blisters on my knees and elbows are much just the odd one. Your comment regarding something still causing the rash made me wonder what is causing my symptoms.

    With regards to how long to be on Dapsone, I have just been to see my GP and have arranged that I stop and start the Dapsone as and when needed, so if my rash is keeping me awake on a night to take a few tablets to ease the symptoms, I have found taking 3 tablets ( 50mg) over a three day period was enough to ease my symptoms and stop me going mad with the itching. The spots reappear again but at least I have had a bit of respite from the itching. My GP said that if I am on the tablets for any longer period than a week I need to make an appointment so that they can organise monitoring.

    thanks for any help you can provide

  • Thanks for your information re the Whisky . I may now know what has caused my DH to flare up . Back to the dapsone !

  • Hi, From all I've read about Dapsone, you have to be on it for several months....I use Eumovate cream... but not very often. I am classed as a 'well managed coeliac' My rash when it appears now is usually up my forearms with the odd spot in other places.

    There is someone else on here who is also having problems, not DH but generally still not feeling well on a GF diet and they are eating oats. I still don't touch oats, haven't wanted to risk it.

    The other thing that I have started wondering about is the use of GF food that uses wheat starch. When I was first ill I was misdiagnosed as gluten intolerant (we are talking 20+ years ago) and there was very little on sale in the shops, so I went on a naturally GF diet of using potatoes and rice as my carb, cooking everything from fresh ingredients, no GF sauces etc because there were really none to choose from. I couldn't afford to buy GF bread through the chemist(it was £4.64 a loaf then!). I was on this diet for around 18months until I was finally given a proper diagnosis. I now eat GF bread and the wheat starch products and have no trouble. So, did not having the wide range of GF food available help my body to heal quicker and more completely? I don't know.

    If you feel up to it , you could try only eating fresh veg,fruit, fish and meat and see what happens. You would have to do it for a few months(I'd say at least 6) because DH takes ages to clear up. I've copied an bit from an article about it just below.

    How is dermatitis herpetiformis treated?

    There are two treatments: diet and medication.

    In the long-term, a diet free of gluten will gradually reduce the DH symptoms, and may cure DH completely. (This diet also treats coeliac disease.) However, it can take months or years for the diet to improve DH, so medication is often needed to bring the skin symptoms under control. More information about the gluten-free diet is available from the leaflet about coeliac disease, and from Coeliac UK - see the further information section below.

    Medication helps control the rash quickly. The usual medication for DH is dapsone tablets. Dapsone often stops the itching within 2 days. Dapsone may have side-effects, including anaemia, so regular check-ups and blood tests are needed while you are taking it.

    What is dapsone? Dapsone is a tablet that is used to treat certain skin conditions, including DH. We do not know exactly how it works, but it seems to have anti-inflammatory and anti-bacterial actions. In DH, it is probably the anti-inflammatory action that is helpful.

    If you cannot take dapsone, or get side-effects from it, then other possible medication is sulfapyridine tablets, sulphamethoxypyridazine tablets, steroid creams (high strength) or steroid tablets.

    Are there any complications of dermatitis herpetiformis?

    DH itself does not usually cause complications. However, the gluten intolerance and coeliac disease, if untreated, may make you ill and have possible complications. Most of these problems can be prevented or treated by following a gluten-free diet, which treats both DH and coeliac disease. See separate leaflet called 'Coeliac Disease' for more detail.

    What is the outlook for dermatitis herpetiformis?

    Untreated, DH tends to go ‘up and down’ in severity, but usually persists.

    With treatment the outlook is very good, as DH clears up with medication and a gluten-free diet. Dapsone usually improves the rash quickly. The gluten-free diet takes longer to help – it may take a year or more to get the full benefit. About 8 in 10 people with DH have good results from the diet, meaning they can either come off dapsone completely or can reduce the dose.

  • Hello , very interesting to read your article . I'm a fanatic GF diet phobic . But I'm at the mercy of hotel chefs , other food outlets as we do eat out a great deal . At home there is no problem . But I'm sure there are people , chefs that have no idea about a dedicated area and appliances ie toaster , spoons and cross contamination . Thanks

  • I'm continuing here lol....Maybe you are hoping for a quick fix..I don't think there is one of those but there is a long term one so please stay positive. If you need any help with trying the totally naturally GF diet then please feel free to ask for food ideas. Good luck

  • Hi again, many thanks for all of the advice, I have just asked my doctors whether they will prescribe the cream you have mentioned as unless they have prescribed it under a different name I havent had it before.

    With regards to the diet when I first found out that I might have CD I did have a very basic diet as i didnt have any advice from anyone on what to eat so just stuck with the basics and I seem to recall the rash did go. Once I was diagnosed and received the CUK book and prescriptions I received codex wheat starch bread and started to eat things like Bisto Best gravy, Tesco cornflakes etc which are supposed to be ok for people with CD. I quickly gave these up as I wasnt feeling any better for being on the diet and I had the rash. I like you havent tried oats as I didnt want to risk them

    I tend to cook most things from scratch other than the odd pasta sauce etc, however the thing I really struggle with is gravies and stock cubes, I did try to make my own stock but to be honest it was like dishwater, took hours to make and was expensive as well. I have now started using Antony Worrall Thompson gravy and Kallo stock cubes, I have been feeling better in myself lately (on GF diet for almost a year) but still have the rash. I am at the moment recording everything I eat so that I can pinpoint any reactions. Thanks again for all of your advice it is appreciated

  • Hello, I have been on Dapsone tablets for 33 years, having been diagnosed with DH. I am lucky enough not to have any side effects, and wherever possible stick to a GF diet, however if I do slip on my diet the dapsone seems to stop any skin irritation whatsoever. Over the years (ie when pregnant) I came off the dapsone tablets & found that my rash would just come straight back. I must admit I havent tried it for some time as I dont really want the discomfort or irritation.

    Just to add another tangent to this disease, my daughter who is now 22 was also diagnosed a Coeliac last year, but not the DH type. Not sure whether this disease is hereditery but our case certainly makes it look that way!

  • hello dear ,r u really on dapsone for last 35 years

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