wegerners rash

[morgan33]

Hi i was diagnosed with wegerners xmas time and as i go on i experience different symptoms one of which the latest is a rash and spots all over my body and a burning sensation on my face and most of the time my face is bright red it also occurs on the palms of my hands and soles of my feet does anyone else experience the same if so can the consultant precscribe anything , thanks .

[Martinf1]

I was diagnosed with wg 2012 and i have has all of those symptoms my kidney have been the main consurn with my consultants now that these are stayble i been sent to see other contsultants dermo specialist for my skin cardio chest & lung fuction tests i believe the burning and pain in feet is down to poor circulation in my lower legs

[AllyGY2013]

Hi Morgan,

I too have been diagnosed with Wegeners/GPA and I can certainly empathise with the hot, red face. It used to be intermittent but the redness is there most all of the time now and can be very hot. The rash on my face helped to diagnose vasculitis in the first place.

I also get a similar more mottled rash on my arms in particular, and at the moment, they are very itchy but the itch may be eczema which I have suffered with in the past, especially as summer arrives. My feet and hands get very hot but don't tend to go red.

I have had purple spots on my arms which have faded over time, they improved when I was put on prednisolone and then I was taken off that and prescribed plaquenil and over time they have faded away, although when I have an infection or cold etc they tend to return. They don't itch.

I have found that diet as an impact on my symptoms and kept a diary of what I ate and drank and how my symptoms were, this allowed me to find triggers that make my symptoms worse and so avoid certain foods, I don't do without them entirely but am aware that if I eat them then my symptoms will be worse - which need is greater? The chocolate, cake or slice of fresh white bread or the the healthy day? Sometimes the cake wins, I accept that.

Definitely mention these symptoms to the doctor or specialist in charge of your care as your medication may need reviewing and all symptoms help build a picture for them.

I wish you well,

Ally

[Porky in reply to AllyGY2013]

Hi

i don't have WG but do have vasculitis.

I also have the rash which generally is over my arms, hands and to a lesser amount legs and torso. My arms, hands, legs and feet burn almost constantly, with an itch at times and I also get pain but that is due to PN.

I take pred, plaquenil, MF and others but nothing really controls the burning/itch. I take co-codomol to help reduce this at night.

I empathise with you but there don't seem to be any answers. If not already do let your consultant know. I did see a dermatologist early on but not since.

Take care

[Hidden]

Hi Morgan33, I hope you're well today. I have WG and rashes too. My whole body is covered in various blemishes, blotches, spots and scars. I have psoriasis (have done my whole life) which makes for most of the markings but I also have other patches of unexplained "it could be the disease or the medication, let's wait and see" stuff. My advice is to ask for a referral to dermatology who have the expertise and experience to know the difference between eczema and dermatitis etc. I am looked at regularly by ent, dermatology and nephrologist consultants which gives me the reassurance I need to focus on being healthy and positive. I have changed my diet (including going gluten free) and exercise regularly which I think helps me. I do get painful feet and hands but I don't know why. When I was on higher doses of prednisone it really affected me, things tended to calm down as they reduced and the immunosuppressive drugs kicked in. Take care.

[morgan33]

Thank you all for your replies im seeing my consultant tomorrow ill tell him my concerns , take care all .