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?:confused1:

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.

[Alysia]

Dear Nikki,
I am so sorry for you, for all the sufferings you are going through, it is really too much and too long :crying:
at least some "good" things: that the skin issue is nothing, that you have good doc, that you are changing way of treatment and it means HOPE, and that now you know how flare looks like :sad:
I am sending you my praying :hug1:take care.

[whatthewhat]

Our daughter had major skin involvement at the time of diagnosis. Her biopsy was done actually on her skin. She had 5 different types of rash on her, and they were literally head to toe. Anything on her skin gets evaluated now. Hope this helps you!

[whatthewhat]

Oh, this will teach me to read the whole thread before replying! Anyway, I'm so glad you got it looked at. And I hear good things about Mtx sq...

[gilders]

So pleased to hear the rash isn't WG.
Hope the injections work better than the tabs.

[Barbara N]

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.

What did they do for your kidney dysfunction?

[gilders]

What did they do for your kidney dysfunction?

I know you asked Mark the question, but I can let you know how they treated my kidneys (probably same as Mark).
3x 4hour haemo-dialysis per week and 2x plasmapheris per week. Strict fluid restriction which was 350mls/day (approx size of a small can of coke), this included anything like gravy, custard, milk with cereal. I really struggled with this. I even got to the point where I wanted to drink my own blood, the idea being that I technically wasn't increasing my fluid intake. Obviously I soon realised that although my intake might not be increasing, my kidneys would still have to process it.

[Barbara N]

I know you asked Mark the question, but I can let you know how they treated my kidneys (probably same as Mark).
3x 4hour haemo-dialysis per week and 2x plasmapheris per week. Strict fluid restriction which was 350mls/day (approx size of a small can of coke), this included anything like gravy, custard, milk with cereal. I really struggled with this. I even got to the point where I wanted to drink my own blood, the idea being that I technically wasn't increasing my fluid intake. Obviously I soon realised that although my intake might not be increasing, my kidneys would still have to process it.

Thanks, it sounds awful. I see my kidney doc on the 7th of October and my results aren't very good so I am, a bit scared. I'll see what she has to say but my Creatine is almost 5 and my urea is really high fortunately my potassium and triglycerides are in the normal range which is strange for me. Usually they are the ones that are way out there. I am very anemic and am just getting over a flare so I still have a few trouble spots like rashes on my skin but they are just blotches they are not raises or spotty and they don't itch..

[pberggren1]

I guess 5 for creatinine for you Barbara would be 500 for me. Right now my creatinine is 90 and the normal range is like 65 to 115.

[Debbie C]

Phil, they must have differant ranges there. The creatine range at the hosp where I get get it done is 0.5 - 1.1. Are you sure yours is 90 ????

Barbara..good luck at your drs. I hope they are able to fix you with some meds

[pberggren1]

yes, mine is 90......it would be the equivalent of 0.9 in your range.

[mishb]

In Australia the average range is 45-85 umol/L
Mine is 75 - was 65 when first diagnosed. I'm not sure how this relates to yours

I know I've said it before - I wish it Country would have a set standard rating :sad:

[drz]

In Australia the average range is 45-85 umol/L
Mine is 75 - was 65 when first diagnosed. I'm not sure how this relates to yours

I know I've said it before - I wish it Country would have a set standard rating :sad:

The normal ranges for lab work are pretty consistent although some times a lab will adjust for age or race and another might not. What varies mostly is the way the results are reported but there are charts that give equivalents like they do for Centigrade to Fahrenheit temps. Many labs in USA use different ways of reporting their lab results but results are the same regardless of how reported unless they use a difference reference point. The temperature is same whether it is reported in C or F but we have to translate it to the measurement that is comfortable for us to understand given our frame of reference. Hopefully our doctors can do this and evaluate whether there is any significant change in our lab work or trends worth noting.

My meters for testing my blood glucose levels give me a choice on how I want results reported and I would guess labs have similar choices.

[NikkiNicole]

Seriously, I am not a happy girl. At .... All. The spot on my leg is now swollen, painful to the touch, bright red with pink all around it and hard as a rock. I took a picture and emailed it to my doctor because she wanted to see it ASAP. I'm now getting a spot on my pinky finger and my left shoulder.

[Dirty Don]

NikkiNicoleAlison...get your gluteas maximus to the doc...puuuulllleeeeeeezzzze!

[NikkiNicole]

I was just there last Tuesday. She looked at my spots and said they weren't related. Just dry patches. Now, one of the dry patches has gone rogue.

We are in communication. I go on Monday to be taught how to inject myself with MTX. If still no improvement ...... CTX is on the horizon.

[Dirty Don]

Why ctx and not rtx? Communication is different than being there m'dear! I'm not sure she knows what she's talking about. I've been having problems with stomach...doc can't seem to put his finger on it as the symptoms are NOT WG nor are they clearly gastric. Well, turns out...that WG so badly destroyed my sinuses that during the nites, the 'crap' drains from my sinuses into my stomach and sits there till morning when I arise and start my daily cough clean out of clear white stuff...definitely not WG...but, the point is: that stuff has sat on stomach all nite long and it takes a while to clear out the next day...it is from WG, but it's not WG acting up. So, are your spots WG, maybe not, but bet ya one dollah missy that yo' patches are related to WG somehow, even if indirectly.

[NikkiNicole]

I can bet one dollar. That's a bet I can afford.
I sent the photo over, I'm waiting to hear. I hope the injected MTX does the trick.

[mark]

What did they do for your kidney dysfunction?

This is a very long story that I hope to be able to tell in the future. But I am in me thered flare in the past 2 1/2 years and the brain is'nt working good so writing all they did to keep me going isn't possible right now. In short they took me from a survival chance of 40% for the first 2 days to today having a kidney function of 70%. And the doctors calling it miraculous.

[Barbara N]

Thanks, it sounds awful. I see my kidney doc on the 7th of October and my results aren't very good so I am, a bit scared. I'll see what she has to say but my Creatine is almost 5 and my urea is really high fortunately my potassium and triglycerides are in the normal range which is strange for me. Usually they are the ones that are way out there. I am very anemic and am just getting over a flare so I still have a few trouble spots like rashes on my skin but they are just blotches they are not raises or spotty and they don't itch..

Thanks Gliders, it sounds awful, I hope I don't have to go for dialysis. I don't know how we put up with all of this stuff that keeps coming our way. It seems you start to get better then along comes something new and exciting and horrible. Stay healthy, Barbara