I have been on Dapsone for three weeks now, and felt enormous relief Immediately: no pain. Only problem is a slightly itchy scalp.

[Zlata]

Will Dapsone eventually repair my scalp? Anyone else had this problem?

[TheReflexRoom]

What is Dapsone?

[tmoxon]

Hi Zlata

Glad to hear that the Dapsone has provided some relief for you, I only take one or two 50mg a week to dampen down my symptoms. My scalp also gets a rash sometimes and the Dapsone relieves this. If you can I would go to your GP and ask for some dermovate scalp application, this is a clear liquid which you apply to the affected area which may help with the itching. Hope you feel better soon.

For the person who asked what Dapsone is, it is a medication used to treat DH.

[Zlata in reply to tmoxon]

Hello Tmoxon,

I am taking 100 mg a day until I can transition to a strict GF diet. Can you tell me how long ago you were diagnosed? Did you take a higher dose of Dapsone at the beginning? I can't really complain too much about the itchiness given how miraculous this treatment has been in every other way.

I gather Dermovate is a prescription--I will ask for this asap. I appreciate your advice very much because I am still a newbie.

[lummie in reply to tmoxon]

Hi Tmoxon . Sorry to be a pain . bit of a noobie . just diagnosed with C.D. am on GF diet . i have a range of symptoms . What is DH?

[tmoxon in reply to lummie]

Hi Lummie

Not a problem, DH is dermatitis herpetiformis which is a very itchy blistering skin condition that is caused by gluten. Some people only have CD and some only have DH, others have both. You have a skin biopsy to have a proper diagnosis.

[lummie in reply to tmoxon]

Hi Tmoxon . Thanks for explanation .

[tmoxon]

Hi Zlata,

I was first diagnosed with CD by an immunologist just over 2 years ago. I realised after reading up about DH I had this as well. I had been prescribed creams and ointments for years, but nothing really helped. A year after going gf I still had the rash although I dont get as many blisters, so had a skin biopsy, which confirmed DH.

Despite being extremely strict with my diet I still get the rash, particularly on my back. I was getting a bit down about this, and I have had people on forums say that if I still get the rash I am still eating gluten, however despite keeping a detailed food diary I cannot trace where I am getting any gluten. Both cuk and my immunologist say it can take several years to be free of the rash even on a strict GF diet and to take the dapsone if required.

I have only just started to feel better on the GF diet after nearly two years, so I will have to be patient with the DH I suppose.

I was given 50mg of dapsone to be taken every day, however I found my legs were becoming swollen, and I thought it caused cramp. My lips also go blue if I take it regularly. As mentioned before I now take the dapsone only when the rash is really annoying me, I appreciate that we are all different and because you have been prescribed a higher dose that your DH may be more severe.

I am surprised your GP or specialist hasnt advised a GF diet upon diagnosis as well as the medication, I would try to start the diet as soon as you can, as you may find you can cut down the dose you are on and you might find like others have your DH goes or significantly improves.

Are you been given the required blood tests regularly? my GP had never seen DH before and need to research it, he said if I took the tablets for over a week I needed the blood tests.

People have suggested using aloe vera gel on the rash, and it does help but only for a short period of time.

Hope the above is helpful

[Zlata in reply to tmoxon]

Hello again,

Yes, I am having regular blood tests, and so far, so good. I have had enormous fatigue in the afternoons, but I think this symptom (of Dapsone, or of the disease?) is waning. I have been tentatively diagnosed by a Dermatologist; I had a shave biopsy a few months ago that indicated Bullous Pemphigoid as well, but the doc isn't pursuing that one for now. DH seems much more serious, and requires care asap. I am pretty much GF free now, but if she wants another biopsy, I will have to change my ways for a few days. I do not look forward to that!

Another question: I wonder if folks with DH have any problems working full time once they are on the diet and/or taking Dapsone.

Thank you for your kind replies.

[tmoxon]

Hi again, I have just seen a few people mention this cream patient.co.uk/medicine/Mome... on another forum saying its agood treatment for DH. I notice this is available as a lotion so this might be better than the one I suggested.