Wegener's Skin Issue

[NikkiNicole]

Has anyone out there every had any experience with the skin presentation of Wegener's? I am going to see my good doctor on Tuesday but I have suddenly found myself with some suspicious red blotches. One is on my arm, just up from my wrist and the other is much larger on my calf. They don't itch, they are red and raised.

I just don't know if I should bring this up to my doctor or just pass it off as just some sort of irritation on the skin and leave it alone. It does seem to be spreading to various parts of my body.

ANyway, just checking ...

[Dirty Don]

Of course you tell your doc about anything that could even remotely be related to WG!

[NikkiNicole]

I know, I'm still gunshy after the doctors at the beginning of all this were so quick to dismiss whatever happened and seemed irritated that I was coming to them with concerns. I will bring everything to her on Tuesday.
I really hope things aren't getting worse.

[gilders]

Hi Nikki,
I don't want to scare you, but this worries me more than all the others symptoms you've been worried about.
I did have "the rash" the first time WG reared it's ugly face. Again, without wanting to scare you, about 2-3 weeks after the rash appeared my kidneys failed. I can't see your rash and if you google "WG skin rashes" the images and info show a variety of rashes. But yours sound like mine were to begin with, i.e. raised and non-itchy. Mine were a deep red, almost purple colour.
From what I understand the rash is blood vessels that have swollen and then burst. This is vasculitis and most likely means WG is active and quite agressively so in my case.

Unfortunately most WG symptoms can be passed off as nothing to worry about, but not all are and ALL need checking out to confirm that they are nothing to worry about. I am probably the worst person to give advice as I don't listen to my own advice as I don't want to pester the Drs and have them thinking I'm a hypochondriac, so I often let things fester.

Hopefully it's just a rash that has no WG connection, but it's really not one of those things that can be ignored.

I guess if you're seeing your Dr on Tues it could probably wait, but don't you dare not bother mentioning it to her.

[drz]

Skin problems are not common in initial presentation of Wegs but that changes with time so after a few years most Weggies will have some skin presentation according to one of the research papers presented in last Vasculitis conference. We often fail to remember that our skin is one of our major organs too. I didn't think much about it till some lesions reappeared a couple years after intiial treatment for Wegs. Some skin problems related to Wegs or its treatment are very gross and cause serious disfiguring and very hard to treat so it would seem prudent to get evaluation for any skin problems as soon as possible. Other things than vasculitis can cause skin problems too like drug reactions, having our immune system suppressed and various skin cancers which are more common too after treatment for Wegs and having a broken immune system. I didn't think a "pimple" on my nose was significant but my dermatologist noticed it and removed part of it for biopsy since it looked like a skin cancer to him. It turned our it was "just" one of the many keratosis caused by my suppressed immune system which he treats by freezing them with liquid nitrogen before they become cancerous. i now see dermatologists as regularly as my other specialists to help monitor my problems related to Wegs and its treatment.

[mark]

Skin, made up of the epidermis, dermis and subcutaneous (hypodermis) layers, is the largest organ of our body and has many tasks to accomplish such as protecting us from all types of threats from the outside, like diseases. It also has a major role in climate control for our bodies through our perspiration and an increase of blood flow to the surface (appearing to the outside as flushing or turning red as in high fever). To accomplish this, our skin is very vascular. Much of witch is made up of the microcirculation, arterials (very small arteries) capillaries [capillary beds] (an area of the circulatory system so small the blood cells can only pass thru one cell at a time, this is the area where gases and nutrients between blood and cells take place) and venules (very small veins). This is also one of the areas that Mr. Wegener likes to hang out.


I personally am one of the more sever cases of Granulomatosis with Polyangiitis / Wergener’s Granulomatosis (GPA/WG). Within two (2) weeks I had five (5) organ systems affected by this affliction, and that doesn’t include all the long standing joint pain I had. The only one visible to the outside was the skin. I had black spots (necrosis, area of the skin that had died), red spots (rash), and blue areas (cyanosis, from poor circulation) and lesions.


Some refer to skin condition as a window to the inside. An adequate practitioner will always take into account skin condition when assessing a patient. Much can be revealed by skin condition alone. In my case what was happening on the outside was also happening on the inside. My GFR was 4 (US) [kidneys were performing at 4%/100% “normal” function] and a kidney biopsy, showing necrosis, lesions and hemorrhaging (uncontrolled bleeding) and granules constant with GPA/WG, proved why.


As GPA/WG patients, it would serve us well to be ever mindful that what may be a small thing for most can be a big thing to us. It may be the wise wegi that takes what is happening on the surface seriously and reports changes in skin condition to their physician.

[gilders]

Mark,
My story is very similar to yours. As I mentioned within 2-3 weeks of it showing on my skin my kidneys failed.
As well as the red/purple lumps, I also had the black areas (I think these came slightly later than the little lumps). My uncle said I looked like an over ripe, bruised banana.

[Woodsyartist]

Thinking of you Nikki and hoping you get some answers. Tell your Dr about the skin. As I see it, its your job to report it.....
Follow up please and let us know how it goes.

[gilders]

Where are you Nikki?

You're always so active on here.

Hope everything went well with your "good doctor"

[NikkiNicole]

Here I am!
I just got to work after being at the doctor and then cooking my dinner.
So .... I'm apparently having a bit of a flare already. Apparently, my MTX in pill form isn't quite doing what it is supposed to be doing. The specialist at UCSF only uses the injection version of MTX because it goes right into the system and the docs can be certain that I am getting the full treatment versus if it has to be broken down in my stomach and then sent on it's way.
On Monday, I'll switch over to the injections of MTX. And, if that doesn't work ... we will meet again and discuss getting bigger guns involved.
I don't want to poke myself. But, I don't want to keep feeling worse by the day.
Today, I feel miserable. I almost didn't come to work. I'm out of it. I feel like a bus ran over me multiple times. I am regretting my decision to come to work.

Oh ... and the skin things are completely unrelated, just random dry patches. But, we are watching it.