itchy sores that don't ever go away!!! - Hughes Syndrome -...

Hughes Syndrome - APS Support
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itchy sores that don't ever go away!!!


I have these itchy sores that appear on my forearms, hands, fingers, and legs.  they seem to all start a little differently--some start by itching and then turn into a regular looking blister, dry out and itch like crazy but never quite heal and the process starts all over again.  others start as a raised, itchy small area sometime with what appears to be a whitehead in the middle, but when i scratch it, because they itch like mad, they bleed.  No puss or anything and then after a week or so, turn into like a hole in my skin which again itches like mad and never goes away.  it will develop a scab, but that is as close to healing as it gets and then it will, out of the blue, start itching again and i will scratch off the tiny scab and then it bleeds like crazy and itches at the same time--just like when it started.  I am getting more and more of these and my doctor assures me that it isn't cancer.  He wants to send me to a dermatologist and I think I"m gonna go.  Does anyone else have this kind of skin problem and if you do, do you know what it is so that I have some idea what I am dealing with as it takes weeks to get in to a specialist--even with a doctors referral!!!

11 Replies

This is a site for APS and I wonder if you have got a diagnose of  APS?  Sounds awful with the bleeding and itching. If i were you I would do like your Doctor suggested and get a referrel.Good Luck with it and hope you will soon be better!

Best wishes from Kerstin in Stockholm

Sounds like part of Mast Cell Activation Syndrome to me. I was just diagnosed. I have Primary APS, which in turn has turned into POTS, MCAS, and autonomic neuropathy. It might be worth looking into. My doc directed me to research Dr. Lawrence Afrin. Good luck!!


This is a forum for patients suffering with APS/Hughes Syndrome, it is not a general medical forum.  Please confirm that you have this condition.  If not, then this is not the forum for you.




There is no need for the capital letters, I was not trying to be funny but we do get people who have arrived here by mistake and we try to get them to the right place.



I have the same thing   try washing the affected area and then pad the sores with rubbing alcohol let it dry then apply some gold bond body lotion in the green bottle. it may take two or three applications but it worked for me.    good luck

I too have little blister type spots and itch like crazy. But have been to dermatologist it's nothing to do with my aps but a genetic thing. Have used emollients. And cortisone creams but mine wont get better. It's called bhd. But only 400 families have it so far worldwide. Have you bathed in e45? It helps the scratching.or shower with it you never feel really clean as its not a soap. Not much help I know sorry only thing I can offer.X


the only thing that helped the topical itching was old fashioned Calamine lotion NOT Caladryl (believe this has benadryl)....cortisone creams made everythink worse...bakibg soda paste also helped..But in the end I was prescribed oral Prednisone....I usually do not take steroids...but a few pills and the itching went away......My Rheumatologist told me that when we scratch our skin...."antihistamines"(ie immune response) are released.....This is my "theory"...I was gardening and was scratched on my legs by rose bushes...."antihistamines" immune response went "crazy" thus the terrible itching and redness.......I now take an allergy medication (Zyrtec,Benadryl etc.) as a prophelactic.....when working in the yard....I have not had a "flare up " since...


Allergy medications "Tamp" (s this the correct word?) the immune response

I had this problem for 15 years and only recently have they gone away (arms and legs). I did not wear short sleeves and when I did people thought I had cigarette burns all over my arms. They would blister, bleed, appear overnight, and sometimes be purulent  I was told one thing and then another regarding what might cause it. I have heard everything from tiny blood clots in the capillaries to Psoriasis to "oh that is just what APS does." However, finally found out that I have a severe gluten allergy, possibly Celiacs. I have really changed up my eating habits, watching out for gluten.My arms and legs are now clear but my hairline, neck, and onto my scalp is now showing symptoms, but are somehow a bit different, far more painful and might be connected to my hair products. The new sores come and go and are not constant like what was on my arms and legs. I have APS but this turned out to be an allergy instead. I hope you finally receive help....blessings!

It took doctors/dermatologists to diagnose my skin lesions until a Dermatologists identified them instantly as Pre Bullous Pemphigoid Ulceratios. A blood test confirmed her diagnoses

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