weird skin issues?

[wendya432]

Does anyone else get any odd skin issues? Not sure if they are ulcers or just a result of the vasculitis aspect of behcet's.

First I get what I believe is livedo reticularis. Net like pattern on arms and torso that get's worse when cold. It is quite a sight when my Raynaud's is acting up and I have white fingers and redish purple lines all over me!

But I also get areas that I assume are the LR. They are like rings in the net/lace like pattern. But a few of them, especially one on my chest, gets little pustules/ulcers on it. It is right on the faint red line. A few little fluid filled bumps will emerge and then open and leave a shallow sore. They don't bleed like the lesions I get else where sometimes do.

Then, I have some areas on my legs that always get lesions in a straight line. Like someone scratched me with a straight edge. But there is no physical trama. They also come and go in the same spots. Just lines of bumps perfectly straight. Sometimes there is petechiae around them, sometimes they crust over, but usually they stay small and just come and go at random.

And lastly, I have these rings that form with the same type of bumps. I will attach a picture if I can figure it out. Not sure if they are petechiae that form a ring or something else.

I am trying to get pictures of everything to show my doctors and hopefully someone will think of behcet's at some point if I can get one of them to listen to me.

Just wondered if anyone else gets anything like this.

I will add a pic in the blog section

[amietamant]

Although I get them frequently, I learned that linear Behcet's skin ulcers are rare. Some doctors have accused me of scratching myself or whatever to cause them, but like you know, they just appear in straight lines on our skin. Finally, my current dermatologists wrote in my reccord that yes, they agree that these linear ulcers are caused by my Behcet's and not self-induced.

You can view 30 photos of my ulcerations, including some of the linear cutaneous ones, by Googling "Behcet's linear" and going to the first result and clicking on the poster's name "behcets" to find the two pages of photos. Please let me know if your linear skin ulcers look like any of mine, okay?

Hugs

[wendya432]

Yup! That is what mine look like. Typically mine aren't as bad, but sometimes they are. I have a scar/red spot from one 6 months ago that is just starting to fade.

[behcetshurtsbeyondwords]

Hello,

I was interested in seeing your pictures, Amietamant, because I've never really seen any pictures that resemble the different rashes and lesions that I often get-- I hope you don't mind that I looked at them.

One of them that I often get, in particular sounded a lot like what you described about the line rashes. Sure enough, they look exactly like mine. I thought I was so odd getting these raised straight lines all over my skin at times that just suddenly appear; they look like something had scratched my skin in a straight line. I too have had many different doctors accuse me of scratching my skin and some even had the gull to tell me that if I stopped scratching and picking at my skin, then I would feel better. Yea sure.

When I broke out in really severe ulcerations and open, raw skin on my hands and bottom of my feet, I was accused of taking a razor blade to my skin! I was in the hospital at the time, and was extremely weak and in severe amounts of pain-- I couldn't even hold a cup and bring it up to my mouth, so the thought that I could hold a razor and then deliberately scrape my skin with it seemed just plain dumb. I've also been told many times that the lesions and ulcers were just acne that I would pick open. Even when I would break out spontaneously before their eyes and have them just tear open and bleed on their own, they wouldn't admit that it was linked to something serious. They would often just try to come up with some other explanation, and others would just sit there silent because they couldn't deny the fact that it happened without any physical trauma.

It is pretty sad how doctors are so quick to minimize the importance of strange rashes and lesions that appear on the skin-- after all the skin is our largest organ and is often the first part of our body to let us know about our internal health. My line lesions/rashing often will be a bit raised and red, then they often crust over a bit (like the ones in your photos), and some of them will open up into a sore or ulcerate, but they always will leave a whitish opaque and shiny marking on the skin that takes many months to disappear. Except I do still have a scar on my back from one that ulcerated pretty deeply. Many of your other photos showing some different lesions and ulcers also look very similar to ones I get. There are so many different variations of rashes and lesions that we can get from Behcet's, that I don't think that there are specific types of them, like with Lupus, the malar "butterfly" rash and cutaneous disc lesions are lupus-specific. Even though I don't have lupus, I still get the malar rash very often, almost on a daily basis; but mine tend to begin with swelling of my cheeks and then painful burning, the skin will start flushing with heat and turn a deep reddish-purple and you can see the tiny capillaries breaking open and leaking into my skin. Where as I think the malar rash with SLE tends to be more raised with lesions (although there are probably variations also).

It's just very interesting to compare rashes/lesions.

-Jenna

[wendya432]

Jenna, very interesting! I also get a sort of malar rash. It is odd because sleep seems to improve it. In the morning I am not so bad but it progressively gets worse throughout the day. By bed time I have a horrible red butterfly shape rash on my face. Same thing happens every single day. Fluorescent lighting makes it much worse. As does over doing it and exercise.

[behcetshurtsbeyondwords]

Oh my! that is exactly what happens with mine! like right now at almost 11:00 at night, my cheeks are very swollen, red and hot. I tend to wake up in the morning with no rashing at all, but then it progressively appears throughout the day. Sometimes it will come and go throughout the day or it may just linger on. How strange.. but nice to know that I am not the only weird one just kidding.

[Katniss12 in reply to behcetshurtsbeyondwords]

Same here with the cheeks... it has been suggested to be rosacea like. Incidentally, I was put on doxycycline a few years ago while being ill to try and calm skins problems and it works and also ended up where I had not had a mouth ulcer since being on the doxy. everyday for 3 years as maintenance.