Finally got up the nerve to post on this forum! I am submitting a photo of what happens when I have a breakout. This has happened with the last three flares. Among the "sores" or breakout I develop a series of purple spots that look like bruises. As far as I know they're not bruises because I can almost see them form. They form all over my body. My Rheumy thought they may be due to a med I'm taking, but as soon as the flare is over they go away. I'm still on the med, no flare, no purple spots now. So it doesn't seem to be the medication. Wondering if anyone else has had this happen. Thank you all so much!
Beverly
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Wow! Looks like bleeding under the skin with the darker ones. There is a condition called purpura (from purple) not saying it is the same thing but it comes from the capilliaries breaking down. Have a look at Purpura on Wikipedia.
Wow. That sounds scary! As far as scary pics, most of this Bechet's stuff is pretty frightful looking! I have a few pics I won't share! I'll ask my doc about the slow clotting. Thank so much!
With this last flare I had those large red patches all over my body, my chest, stomach, thighs, hips, bottom, legs. And they were as red as they appear in the photo. Some of them covered the whole area of my hips and waist. And, yes, they were warm to the touch. At the same time I had several sores along with this. These red "rash" areas don't turn into the bruise looking things. The "bruises" appear around the sores and the rash. I went to my doc (not my Rheumy) and he gave me steroids. Didn't really help much. I just let it run it's course. I'm going to my new Rheumy this week and will ask him about what you relayed to me. Thank you so much Essie!
Oh my, I hope and pray it never gets that bad! I'm so sorry you had to go through that! If that happens agian I may use your method of marking the areas that are red. I count myself fortunate that I don't suffer like some of the ones who have posted. However I've already developed double vision, a blind spot in my left eye, white matter lesions on my brain and have almost totally lost my balance. I'm going to have to resort to using a cane! Hoping it's not neurological Does it ever end??
Behcet's can cause a wide variety of skin problems not always recognized by doctors as being part of the disease. Once more serious causes of your bruises and purpura are ruled out, then it's likely that you simply have one of these rare manifestations.
Your photo looks similar to what my daughter experienced last year when having her first outbreak of possible Behcet's symptoms (I've had BD for 26 years, so she may develop it or show some of the signs). Her lesions were biopsied by dermatology and showed nonspecific inflammation (ruling out bacteria, viruses, fungus, and clotting disorders) and they were labeled as "not inconsistent" with Behcet's -- even though the tests didn't come back as "vascultiis."
I have confirmed "complete" Behcet's despite no Silk Route history, no HLA-B51, and being Scandinavian blonde/blue. Over the years I've had erythema nodosum (you can't mistake the exquisite pain of these hot lumps), pustules, and primarily skin ulcers, especially on my arms and legs which sometimes bleed. I've have unusual linear patterns of skin ulcers not reported anywhere else or recognized by any Behcet's researchers. But they're what I get, so unusual presentations can't be ruled out as being caused by BD.
Keep taking photos (I take a lot) and keep track of where/when/how long stuff lasts and what meds you were on. Best wishes...
Thanks for your reply! Several years ago it was suggested by my GP (who had never heard of Behcet's) to keep a journal and take photos. I still do.
I've had erythema nodosum on my legs. Very painful! My flares are strange (or not) as certain symptoms will be predominant and last a long time, then another symptom will be added and last a long time, like a couple of years. First it was the mouth sores which lasted for four years. Now it seems to be the skin lesions are more prominent, and the eyes and neurological symptoms! I know you must be so tired! I know I am. Best of luck to you! ?
Yes! I noticed today that my balance is not as off as it usually is! Usually I literally trip over AIR! My double vision comes and goes, as does the blind spot in my eye. I wear prism glasses which helps the double vision - sometimes.
I was just thinking about how all these symptoms manifest, change and "move around" as you said. It's very confusing!
Thanks for that info on the nerves. I'm finding that I learn more from this forum that I do from my doctors!
Hi Amietamant - when you say unusual linear patterns of skin ulcers what do you mean. I'm often accused of creating my ulcers because they are not 'nice and round'. Also, I'll often get a line of ulcers very close together.
Lesley: I frequently get small, spontaneous skin ulcers that break out in a line, usually on my arms and lgts. The lines are not always exactly straight, and sometimes they seem to follow a blood vessel under the skin, but not always because I've also had them in scattered clusters. They also can appear as multiple parallel lines of tiny sores or as rice-shaped lesions. At times, they break out bleeding a tiny bit before drying up and turning to scabs.
Sometimes I feel a prodromal burning and/or itching sensation on the skin where the tiny sores are about to break out. Another presentation has been red, warm inflammation of an area of skin which then develops these ulcers. Putting topical cortisone on the sores doesn't not prevent them from erupting nor does it seem to speed their duration. But if the skin area is burning or itching, I do apply cortisone and sometimes numbing cream.
Every day there are usually some tiny scabs on my body that seem due to Behcet's. Usually I don't discover the smaller lines unless I'm washing up in the shower or shaving. I photograph and track every visible symptom of mine, so I have quite a collection of examples I can share with others. When I've been able to take stronger BD drugs, these sores stopped appearing but would resume when I stopped the drug. Trental, methotrexate, prednisone, Enbrel, and nicotine patches prevented my skin ulcers, but currently I'm only able to take NSAIDs.
Yes, I have researched this phenomenon and exchanged photos and thoughts with about 8 top BD researchers. None of them has ever seen a linear pattern of Behcet's cutaneous ulcers, including the research physicians at the National Institutes of Health in Washington, D.C. where I participated in their Behcet's Disease study for 10 days as an inpatient. Nor has a top Turkish Behcet's dermatologist or Dr. Y Yazici ever seen linear BD ulcers. But none of them blew me off.
Like you, I have been accused of causing my ulcers by scratching or some other psychiatric self-mutilating disorder. This made me furious, especially since I'd had complete Behcet's for 26 years and have had other types of skin lesions as well (early on I had erythema nodosum, plus I've had pustules, petechiae, burning skin syndrome, and stubborn BD acne).
These accusations drove me crazy and I had to "have it out" with dermatology, all the way up to the division head. With my research, input from my rheumatologist and psychiatrist, plus email replies from experienced BD dermatologists who looked at my pics and said that linear patterns seemed "not inconsistent" with Behcet's, my dermatologists finally relented last year, apologized, and wrote in my medical record that now they DO believe these are spontaneous lesions caused by my BD and I should be treated in the future as such.
You can do a Google search for "linear Behcet's ulcers" and one of the first entries will be postings about my situation. Click on my profile "Behcets" and look through the photos posted there. I also have newer photos that show my linear ulcers Ii can send you. If you bring this info and print out some paper pics, it might help them believe you.
Thank you for the picture. I see bruises on myself periodically, but didn't even know it could be a symptom of Behcet's. That is why I love this forum, as it provides information that I would never get from my doctor. Behcet's seems to be a disease with many faces. I am grateful beyond words to all who have shared in this disease.
I agree. I learn even more when I see the photos. Also makes me feel a bit more connected with others who have Behcet's. I know no one personally who has it.
Hi and thank you for the picture! I have had the bruises for years. They were actually my first BD symptom. At the beginning it seemed like smaller veins were involved as the bruises were lighter in colour and closer to the surface. Now I get them deeper and the first sign is pain below the first layers of skin. If I put a bit of pressure on that spot the blood starts coming up to the surface and spreads into a bruise.
I thought this is what they call superficial thrombo-flebitis caused by BD, isn't it? Inflammation of small and medium veins under attack by the immune system.. it seems like the most visible vascular involvement of BD.. Have you ever had them biopsied? Mine are sporadic so by the time I go to see the doctor they are usually gone..
I'm not sure what it's called as my doctors aren't even as familiar with BD as I am. My Rheumy said it was probably bleeding under the skin. And he also said it may be due to anti inflammatory meds, but I wasn't taking any at the time. He really didn't do much about it, just told me that it was part of Behcet's. He sent me to see a Dermatologist but by the time I got the appointment they were gone.
No, I've never had them biopsied. In all these years I've only had two biopsies done! One on the mouth ulcers, which came back as something mysterious - they had no idea what it was. Not Herpes. Then I had one a couple of weeks ago on a strange break out on my neck. This one was different than any I've had yet. It was very rough, course and red and traveled up to my eye. The results came back as a fungal infection.
But now he's having me tested for Lupus! It never seems to end!
I am getting fewer and smaller bruises now but after the hep b vaccine I started getting big ones on my elbows out of all places! Very strange and quite scary. I would love to have them biopsied to understand what happens in my blood vessels. I have read that veins explode due to the accumulation of Ig immune complexes in the vessel wall. It makes you wonder what prevents them from exploding in more vital places like the brain or other vital organs? I am still stunned by the immunologist's dismissal of this possibility when to me it seems like a major risk of morbidity.. He said forget about it, it can't happen! No explanation, no guarantees..
Wow, Lara, I can't understand why an immunologist would dismiss what you described! Maybe you can have a Dermatologist do a biopsy? My regular physician is the one who did biopsies on some of my lesions - not my Rheumy or the many other docs I see!
I think my doc may wants me tested for Lupus because some of the lesions, etc. look Lupus-like. Also my ANA level is always high. I have a lot of symptoms that mimic Lupus. I asked him if Lupus also causes mouth ulcers, joint pain, eye problems and a lot of the other Behcet's symptoms and he said, "Absolutely". But I think he's just doing the "ruling out" thing. I have a close friend who has systemic and Discoid Lupus. Our symptoms do mimic one another at times, but most of mine are typical dead-on Behcet's. However, you can have more than one autoimmune disease at a time. My friend with Lupus has at least two others.
This happens to my daughter, we can see them appear in front of our eyes and often they hurt her whilst it is happening . Her legs are covered in bruises most of the time, but yes when she is more poorly lots more. I feel so sorry for you and I agree not due to meds. Take care .
I am also having the same symptom and it a continuous problem going on. My doctor told that it is due to medicines, but I think it is related to my disease.
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