Hello from a new member

[Irenejoy]

Hi all, just spent a horrendous week with a flare up of hives/urticaria . Been having attacks sine mariund March 2017. Just referred to a dermatologist to see if there is any reasons. I know some people never find a reason. Wish I could pinpoint a trigger so I could avoid it .

[Paprika60]

Since you are with this group, I am assuming you have Urticarial Vasculitis. I too have it.

In my case, it could be easily triggered by heat/cold/damp. I tried all sorts of diets to figure out if it was gluten, dairy and etc but not really. I read it could be dormant virus that triggers it. I used to visit another group (web communication) for this form of vasculitis and many suffered from heat mostly. But in my case it is always chill or damp cold...and we have plenty of those days in UK. When bad I had to wear gloves even in 20 degree weather! I have been on remission for almost 2 years with skin hives and inflammation of joints (with right medication it seems but who knows) but I still have many other symptoms such as constant fatigue, lack of sleep, neuropathy of feet, legs and hands. Have your doctors put you on any medication other than prednisolone?

[Irenejoy in reply to Paprika60]

Hi, just had a change in all my other medications and had prescription antihistamines- nothing made any difference. Having odd symptoms that never before had. Lumps on top of head and swollen ear at moment. Hoping tests results from dermatologist may offer some clues on why happening. I have times where feet and hands so affected can’t work. This episodes behind knees so bad couldn’t walk due to swelling. Just makes me sad.

[AndrewT]

Dear Irene,

First of all, and BEFORE anything else surely.....A Very warm Welcome!

As regards your actual 'Condition', I have little advice to offer- I'm afraid. Apart from talking to your Doctor/Consultants and, this one can be easily 'overlooked', your local Pharmacist. The latter can be, quite often, very knowledgeable indeed.

Sorry that I can't be any more help Irene. (incidentally you have same name, as my Mother)

Kindest wishes, from us all

AndrewT

[Irenejoy in reply to AndrewT]

Thank you very much for your warm welcome. Hoping sharing will help me and others

[Christophene47]

Something different in your diet, in the woods, insect bites??

[Christophene47 in reply to Christophene47]

Just noticed you wrote, " Just had a change in all meds."...that could be it; an interaction between a couple or more. I believe there are a couple of websites where you can list all you meds including vitamins and supplements, if you are taking any, and they will tell you if anything is interacting or could badly interact; exposure to the sun with certain meds can cause skin symptoms. I was taking naproxen at one time for back pain. We started to go to the beach on the weekends. Without warning, I started getting large blisters on my hands and feet mostly.

My dermatologist invited me to meet him at a diagnostic group seminar with other derms, pathologists, students, at the Medical College of Philadelphia. Pathologists; later my own dermatologist called to say that a dermatological lab pathologist in attendance thought it was epidermolysis bullosa, not a good diagnosis.

I found an expert in epidermolysis bullosa in Philadelphia across the river from me in South Jersey who had published on the subject.

I recall he was Finland. By examining me, he could rule it out because I did not have a characteristic scar where the blister(s) had been; he repeated a lot of blood tests and ordered new ones, but all negative.

We reviewed my meds and when we got to Naproxyn, he asked me if I had a lot of sun exposure; sure enough that was it! It was right in the Physicians Desk Reference. I stopped Naproxyn and it never came back. That led to a second chapter which I shall not go into now.💒

Good luck Irenejoy.