Pruritus is a problem that plagues most of my children and adolescents with RDEB (as well as other forms). I have tried numerous oral antihistamines (most commonly cyproheptadine) without significant improvement. Recommendations from the group would be appreciated. Amy Theos, M.D. Assistant Professor UAB Department of Dermatology 1940 Elmer J. Bissell Road Birmingham, AL 35243 205.824.4823 (office) 205.824.4994 (fax) Hi Amy - Such a great question. I wish I too had the answer. I have recently started trying some patients on gabapentin (neurontin) since as a pain doc I've read that some on my field theorize this can be a form of neuropathic pain. It's too early to tell, especially since I'd like them to take it on a tid scheduled basis and instead they've forgotten and used it more PRN. I am also working with my psychiatry colleagues on this issue (in the past have tried SSRI's for pt with cholestatic pruritis due to Allagiles (paucity of bile ducts), and also 5- HT3 blockers with equivocal results in just a few pts). I am very interested to know any other responses you get. -Julie I think healing in general (try asking your patients without EB aboout biopsy or excision sites, or burn patients) itches like stink and is difficult to manage. I have no pearls to offer, but I don't think this is a phenomenon limited to EB Ginna Virginia P. Sybert, M.D.,Clinical Professor, Division of Medical Genetics, Department of Medicine University of Washington I, like all the other folks, don't have a great answer. I use a lot of doxepin--and push the dose to affect. It has been my experience that it tends to work better. Of course like most things in dermatology (with regards to EB) I have no data. In addition I push the dose of Zyrtec. As you know there have been some studies in atopic dermatitis where zyrtec is a better "anti-itch" medication then the other non-sedating antihistamines. I have some of my families use 20 mg/day instead of the "normal" 10 mg/day--of course I do run into trouble with insurance companies wanting not to pay, but usually a letter or two and I can get them to reimburse. I think the biggest problem with pruritus is that histamine plays a small to moderate roll in it's initiation and progression. Therefore, the drugs that we use only have marginal affects at best. I have been tempted to use Neurontin, but have not done so to date. I will be very interested to hear Dr. Good's experience once she has some data. Sorry that this wasn't very helpful. H. Alan Arbuckle, MD Department of Dermatology Pager 303-266-4686 Hi amy, as you know, iron deficiency is easy to overlook in these children and adequately addressing it (where possible) can sometimes make a difference. i also havent had much joy from antihistamines. some itchy EB kids we co-manage with the 'pain management' and behavioural pediatrics teams. amitriptyline low dose anecdotally may help itch and pain if no contraindications (nb lethal cardiomyopathy in eb case report where the child was also on amitriptyline Archives of Disease in Childhood 2005;90:871- 872). John Su Department of dermatology Royal Children's Hospital, Melbourne Victoria, Australia 3052 What do you think about the relationship of pruritus and helicobacter pylori in RDEB patients? Caius Solovan, MD This is very anecdotal, but one of our adult counselors at Camp Horizon with RDEB has been using mineral oil to soften eschars and to act as a skin lubricant. To his surprise, he has had had very significant relief of his stubborn pruritus, far more impressively than with any other emollient. Howard Pride Hi Some of out clients in New Zealand find that bathing in a saline bath with pinetarsal (solution commonly used for anti-itching purposes with chicken pox) added helps to relieve the discomfort from itchiness. I have also heard of adding Baking soda, vineger. Also added below is some info from Debra America www.debra.org. If you put itch into the search box it will come up with related links that may be useful to you. Hope this is of help to you. Itching and Epidermolysis Bullosa In many instances, people affected with Epidermolysis Bullosa may suffer with itchy skin or pruritus. Itching may be due to a number or reasons such as healing during periods of rest, irritation caused by a wound infection and/or sensitivity from exposed nerve tissue. It is helpful to minimize discomfort to avoid further trauma to the skin caused by rubbing and scratching. Some of the interventions listed below, have been found helpful by some parents of EB children and some adults affected with EB: a. Eliminate wool and rough garments b. Launder clothing and linens in mild detergent. c. Keep a cool environment (Air conditioner) d. Wash with mild soaps such as Dove or mild cleansers such as Cetaphil. e. Have questionable wounds evaluated by a physician. If there is evidence of infection physician may perform a wound culture and determine a course of treatment that may include topical and/or systemic antibiotics. f. Apply cool compresses. (Use caution especially with infants since widespread application of soaks may cause temporary decrease in the body's core temperature.) Deanna I wanted to thank everyone for their responses. See summary of all responses. I was especially interested in neurontin and ondansetron so if anyone has any further feedback, either positive or negative, please let me know. I will do the same. Topicals Hydrocortisone 1 – 2.5% ointment Aloe Propolis cream Mineral oil Orals Gabapentin (neurontin) – on a tid scheduled basis Selective serotonin reuptake inhibitors (SSRI’s) – has been used for cholestatic pruritus Doxepin – most agreed that this was the most effective antihistamine Zyrtec – need to push the dose Thalidomide – suggested for the most resistant cases (EB pruriginosa) Ondansetron (a selective serotonin antagonist [5-HT3 blocker] – this was suggested by 3 people; has been reported for hypertrophic scar associated itch Amitriptyline – if no contraindication; there was a report of lethal cardiomyopathy in eb child on amitriptyline Other Treating the associated iron deficiency Behavioral and pain management Amy Theos, M.D.,Assistant Professor UAB Department of Dermatology 1940 Elmer J. Bissell Road Birmingham, AL 35243
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