Skin Rash

[Dorothea]

I have a rash on my wrists hands face and ears.It started on this past Sat.(02/07/15). It starts out itching on my wrists and ears,and it hurts on my face. Does anybody have anything similar? Any suggestions on what I can use on my skin to help me feel better? Could this be a flare?Please help!!!!!!

[annekat]

I think I've heard that the typical Wegs rashes do not itch or hurt. At least mine don't, but mine are very minimal. I'm thinking this could be something else, but I don't know what. Shingles crossed my mind, since it is said to be painful and I would think itchy, too. No doubt others have some more useful input. I guess if it continues, you should see a doc. You could try hydrocortisone cream, in case it is an allergic reaction, but there are likely to be more effective things if it is serious and pervasive.

[Thinker]

I had a Wegs rash on my leg just prior to diagnosis, and mine did not itch or hurt either. It disappeared when I started treatment. I did get an itchy allergic reaction once from an eye cream. I'm also very allergic to poison ivy, had to take prednisone to get rid of it, thought it was great. Little did I know how much prednisone I would be on later in life!:ohmy: Could you possibly have gotten an allergic reaction to something? I would also try hydrocortisone cream and see your doctor if it doesn't get better.

[Alias]

I had a single outbreak of rash on one lower leg, sort of a scattering of reddish pustules. This was several months into treatment with prednisone and MTX. No itch, no pain, and unlike any other rash I'd ever had. I was told that if it did not resolve on its own in a few days I should boost the prednisone. It went away and I've had nothing like it since. Possibly what you have is unrelated, or not directly related, to WG?

[alicia_b]

If the doctors changed your med, like cytoxan to imuran, it can cause a shingles outbreak. That's what happened to me. It wasn't too painful either,just felt like i pulled a muscle. I was put on a permanent shinlge med.
Hope this helps :)

[kaysee]

I had the WG rash too and it did not itch or hurt. It does not sound like WG to me. But I would see a Dr right away. If it is shingles on your face or an allergy like poison ivy it can be very serious if it gets in your eyes.

[MikeG-2012]

Sounds like a classic allergic reaction to something! Better get to a doc quick before it gets worse!!

[drz]

Most people with Wegs eventually develop some skin problems according to one ot the talks at a conference but I think it takes a WEG expert and dermatologist to sort out what is causing a rash. There are so many variations and possible skin problems that seem to often happen after having WEGS for awhile. Some of them come from our suppressed immune system and all the meds we take. Some are allergic reactions to some meds and some just seem to have an unknown cause but are probably related to our WEGS some how.

[Tom]

I have a rash on my wrists hands face and ears.It started on this past Sat.(02/07/15). It starts out itching on my wrists and ears,and it hurts on my face. Does anybody have anything similar? Any suggestions on what I can use on my skin to help me feel better? Could this be a flare?Please help!!!!!!Hi there Dorthea, I am dealing with a rash that comes and goes on my face and scalp! I have a half inch circle of dry skin on my left thigh and the same type on the back of my left arm and on left shoulder! The face is he only rash that burns! Ive been to a dermatologist for the face and the one on my leg. The face and leg appear to be 2 different issues. I was given a prescription shampoo for the face and scalp and it seemed to help for a short time. I later went to a hypoallergenic wash on my own and got some relief but only temporary! I saw my rheumy awhile back and told him I would like to have a referral back to the derm. He said that the rash looked like a yeast fungus and to try avoiding yeat products. What do ya know, I quit eating bread and things with yeast in it and I clear up for longer periods of time! I had just 2 garlic breads with a meal one night and a hamburger bun with the next days lunch and I began to burn and by evening, my face was blotchy and red scaling! I laid off the bread and yeast foods and it cleared up, I tried another sandwich the other evening and I broke out!
Not saying you have an allergy to yeast but I think that with the immune suppressants that we take , it allows for new allergies to appear! I have been a bread and butter guy with all my meals for as long as I can remember, now I cant have it apparently! I'm 58 and was raised with the bread on the table at meal time.
I would suggest watching what you are eating and consider the possibility that you may have developed an allergy to a food that you have always ate!

[mrtmeo]

My mom got a really itchy rash while on Bactrim and rtx, but it was determined related to the bactrim.
Allergies to meds can creep up when there was no allergy before.
Are you on any medications?

[Lilly]

It is difficult to tell what a rash is related to......I just learned this, and Ive had Wegeners for 25 years! When I was diagnosed in 1990, I had been sick for a year, with sinus infections, ear infections, eye inflammation clogging up my tear ducts......treating with antiobiotics. My EENT was totally stumped. Then, (finally, really) I began having traveling arthritis, and muscle soreness that traveled daily. THEN.....I began getting tiny red dots on my palm of my hands and bottom of feet, that would sting when I closed my hands, then spots began showing up on my legs, getting bigger into dime size soft blood spots. I became unable to walk from every major and minor joint in my body inflamed and would not support me. I went to the hospital (where I also worked at the time) and the ER team double gloved, masked up, and I got very scared. Within a week, I was diagnosed, put on 80mg prednisone, treated with Cytoxan. All my spots were clearing up. From there on out, for the next 5-10 yrs, if I got tiny red dots on my hands and feet, my Rheumy treated me as a flare, upped my pred. and that took care of it. Now, as of last week, 12/14/15, I SUDDENLY began spotting all over my legs, spots coming up faster than I could keep up with! But when I went to my Rheumy (a different one, as I had moved) He did not act like it was a flare at all! He said my rash was "Non Specific"......I was flabbergasted! I Knew I was flaring! I started crying, yada, yada, yada.......My sweet Dr realized that I did not understand that the rash I was experiencing was not normal to a "wegeners" flare only. In fact, it was a rare type for a wegeners pt. After 25 years of having this dz, I thought everyone with wegeners had the same rash! Well, of course I apologized to my Dr. and he began his research of making a diagnosis. First stop, CXR, ANKA, Urine, etc. Then next day EENT scope of throat to see why I was so hoarse. The results of that was "inflammation" of unknown origin. So Bingo, another arrow pointing toward a flare. I was put on 40mg pred.-that's where I am now. Its been the weekend, and I have been staying off my feet because of the swelling and pain of my ankles. My spots are not getting worse, but im still swollen, so now Im wondering if I should walk around so I don't get a possible blood clot, or stay off them so they do not get swollen. I know I will be hearing something tomorrow, but right now, Im just very tired, sleeping hard, feeling lethargic, ankles hurting, but worrying about blood clots. When Im in the hosp for anything, they always put the leg things on that blow up and deflate, over and over, to keep blood flowing as im laying in the bed. This is a frustrating time. A scary time. A time of learning what is wrong with me on the INSIDE, what else is inflamed besides my legs, throat? Are my year long lung issues, MRSA, all the infections, all caused by wegeners? Its a scary, disease that likes to hide, then pop out and scare you. I did not intent to type this much. I am worried, and it just came pouring out. Maybe someone else has this "unusual" spotting type of rash with their flares. If so, Id like to know. Blessings, Lilly

[Lilly]

I believe Im having a wegeners flare, and I always thought the rash I got during a flare was a "signature" wegeners rash. Boy was I wrong. Just learning its only one of Many. My Dr. looked at it and acted like it could be anything! Well, of course he was correct. I guess, if you think your rash is "The Wegeners Rash" is the only one, do some research. My Mom and I sure have. We have discovered a ton of information about rashes. Hope this helps someone. I feel a little (a lot) silly that I didn't know this. But I know now! :) Blessings, and Love, Lilly

[Middlesista]

Hi Lily - sorry u are going through this rash situation - any thing that changes for us can be stress inducing - and stress we do not need. I have been reading about rashes also since have a few red spots here and there here - mentioned my doc and am monitoring. None of the photos I found really look similar and would not call my scattered isolated spots a rash but I am new to all this so not really certain.

If you can not get up and walk do move your legs and feet around. I would advise pts to use their legs and feet to make the letters of the alphabet while on bed rest. I also liked those compression boots when I was stuck in bed

take care

[Alysia]

Dear Lilly, I am glad you were able to post here.
You are your best dr. If you KNOW from your long experience that those spots on the skin are an indication to wg, then you must be right. Do you have any results of your labs already ? When will you see your doc ? If you are worried about clots ask for an ultra sound. If its a flare you will need more then pred to treat it. Will you get rtx ?
Dont be afraid my beautiful friend. You are a fighter, and this wg beast will not dare to mess with you too much... Sending dr. Phil to help you beat it... hang in there ♡♡♡

[Lilly]

Im in a bit of quandary. I called Dr. yesterday, Mon. Dec.21,15. Nurse said cxr normal. ANKA first part normal. Second part slight elevation. All other labs normal. So not treating as a true flare. Legs are getting better, but I am still afraid when I look at the "big picture".....This past entire year has been lung issues and treatments, and now, this rash, more severe than when I was Diagnosed. Im afraid it is all inclusive, not just the rash itself. I feel it is part of something going on. Im not trying to be a hypochondriac, I just know something new is going on and I need someone with the right set of eyes to look at my past year. One of my Sisters has offered to take me to UAB in Birmingham, and get back with the group I was with when I lived up there. Its a 4 hr drive, but she has cleared it with her work, and her husband, and will pay all travel expenses. Im hoping this will work out after the holidays. Love you dear friend.

[Alysia]

Hi Lilly, anca is not everything. Do you still have productions when you are coughing ? Can you give them a sputum sample to check if there are any germs ? Have you recovered from the mrsa ? I remember someone around here who did skin biopsy. Is it possible ? Can your doc make a consultation about you ? Do you think that you are feeling better because of the pred ?

Ttust your instincts. You know yourself better then any one else. Keep on checking. Demand a serious evaluation and decent treatment.
Sending many prayers and lots of love ♡♡

[debra]

Lily,hi. Just wanted to say happy birthday! Do something good for you're self.... Deb.

[Birdie]

Im not trying to be a hypochondriac, I just know something new is going on

Lilly,

Make certain you are not ignored. Do what it takes to bring attention to your problem before it gets out of control. If you have to, then scream and yell, throw a temper tantrum, actually BE a hypochondriac instead of worrying about the possibility of being one. If it's nothing, the worst that can happen is for someone to call you a whiner, big deal. Compare that to the worst that can happen when a problem goes untreated.


Gary
Yes, that advice is my broken record. No, I'm not likely to fix it.