I was diagnosed with Behcet's this past June. I began a few years ago with severe oral ulcers that would be large and/or numerous. Often occuring on the back of my throat or even down my esophagus. Along with this came extreme exhaustion and not being able to eat. In May of this year I had my first bout with vaginal ulcers. It was a nightmare and I couldn't walk or pee for over a week! That is when my Rheumatologist diagnosed me with BD. He also noticed that I have skin lesions and scars on my arms and legs. I had always assumed they were mosquito bites since they appear in random places around my arms and legs and I notice most of them in the Spring and Summer months. I knew the scars were bad because I tend to scratch and pick at them(bad habit, I know!). He and my gynecolologist who also saw the skin problems, said they thought it was a Behcet's symptom because there were so many and they didn't think I could get that many bites. Therefore, I had a biopsy on one of the bumps/lesions and it wasn't any skin disorder according to the dermatologist. I did read on a Behcet's website that one of the skin symptoms could be "red bumps that look like insect bites." Has anyone else had this as a symptom? I started getting them about 6-7 years ago right before the oral ulcers started. Thanks!!
Skin Problems: I was diagnosed with Behcet's... - Behçet's UK
Oh yes, These spots that look like mosquito bites are certainly one of the symptoms of Behcet's disease. I think we notice them more in the summer months because we wear lighter clothes with short sleeves. If they are covered up it is easier to ignore them. Be careful with them, though because if you scratch them they can ulcerate.
All the other symptoms are typical of this rotten disease. You need lidocaine ointment for your vaginal ulcers, and there are several ways of dealing with oral ulcers. Ask your GP or even your dentist for help with this.
I hope you are getting some good treatment. You do not say if you live in the UK. There are Centres of Excellence here which your GP can refer you to for expert help.
Welcome to the Behcet's family.
I started with oral ulcers when I was a preteen and vaginal ulcers when I was in my 20's. The skin rash has always puzzled me and my Rheumatologist. The pathology reports always come back inconclusive. The rash is definitely worse in the spring and summer, goes away in the winter. It started about 8 years ago with very sporadic red bumps on my right arm only. Over the years it has progressed to both arms and legs and sometimes trunk. Prednisone is the only drug that will take care of it. When I go off prednisone they come storming back and it is usually the very first sign I am going into a flare. I have to say for me the rash is noticeably worse on my right arm which coincides with the swelling I have as well, always worse on my right. It still remains a mystery and I believe it is a symptom that can be attached to many autoimmune issues.
The comment about your right arm is interesting. My right arm has had the most bumps that have scarred. My arm looks awful with little white scars. I do get them on my legs as well and occasionally on my left arm. A dermatologist also told me that it could be sun sensitivity, which is related to autoimmune disorders as well. I do remember breaking out in rashes from too much sun as a child and young adult, so I know I have sun sensitivity and I am very fair skinned, but this is different, just random red bumps like bites. Thanks for your input, it helps to know others have the same problem.
I do not live in the UK. I live in the U.S., North Carolina. Thank you for responding. It is nice to hear from someone who has the same skin problems with BD. My bumps do ulcerate and scar. I have a hard time not touching them. I assumed the ulceration a were just from scratching off any scabs that had formed(gross I know and not very ladylike). I think I scratch when I am anxious. I have used Lidocaine for the vaginal ulcers and it helped. I have also used many treatments to help with the oral ulcers. Prednisone works best. What medications so you take? Anything help the skin bumps?
Sure. I'd love to talk. Where do you live? I was fortunate that after years of dealing with the oral ulcers, my family members(a few who are doctors) mentioned trying a rheumatologist, otherwise I'd still be looking for a diagnosis. Are you taking any medications right now? I just recently started Dapsone. It seems to have helped a little with the oral ulcers, but not with the skin problems.
i live in southern california.... i am currently having a "flare" which has been horrid. i am on prednisone, colchisine, remicade infusions every 4 weeks, leucovorin and methotrexate injection weekly. i don't believe at this time we have found the right "cocktail".....and i was diagnosed pretty quickly....but was told for about 2 years that it was herpes. but i woke up one day with a horrible breakout,,,my ulcers were cultured for herpes and they came back negative....was diagnosed by a disease specialist, a rhuemy and my gyno'......ive been diagnosed for 3 years....and you? can you tell me your symptoms? and are you soooo extremely exhausted? i can't seem to believe how tired i am???
I started about 5 years ago with awful oral ulcers that went down my throat. I couldn't eat or drink. My regular doctor couldn't even see them so she sent me to an ENT. He was the first to discover about 30 ulcers going down the back of my throat and into my esophagus. I continued over the past 5 years with continuous outbreaks of oral ulcers and extreme fatigue. Yes, I feel it too when I flare! I saw many doctors and had many tests for Crohn's, food allergies, vitamin deficiencies, viruses, Celiac Disease etc... Everything came back fine. It wasn't until this past May thT I had my first outbreak of genital ulcers. I was then diagnosed with Behcet's and started Dapsone. I have been on Colchicine for a year or two with no real improvement and Prednisone is the only thing that helps my flares. I have also been tested for oral and genital herpes many times and many types of tests ( all negative).
I find a cream which is widely available in the UK with calamine helps me to stop scratching these pesky spots. I am sure there is a similar aqueous/calamine cream available in the US.
As soon as you find the best solution for any problem like vaginal and mouth ulcers, I think it is best to stay with it.
Luckily I have settled with micophenalate motefil (MMF) which is keeping my BD at bay. For three and a half years my wonder drug was Infliximab, but sadly it stopped working.
Good luck with the itchy problem. I guess the humidity in NC doesn't help too much.
All the best x
I get a collection of tiny red skin bumps over my back, shoulders and top of chest, some with obvious little whiteheads. I found the best thing is not to scratch them as then they become more itchy and may get secondary infection. It is another form of inflammation in Behcets, this time of the hair follicles called "pseudo-folliculitis" and mine tends to come with a flare-up of other Behcet's symptoms. It improves when my Behcets is treated with steroid, triple mouthwash etc.
Also common are papulopustular lesions which are more solid, red, raised areas on the skin and can contain pus or clear lymph fluid. Again best not to scratch and open them.
If you get tender, raised red nodules on lower legs, especially lumps over your shins, they may be erythema nodosum-like lesions. They last up to six weeks and can look like bruises over time. I think I only had that once and assumed it was insect bites as they were all over my lower legs. Then when they "faded" from red, to look like lots of bruises, I went swimming with friends who were shocked at the sight Of them and quietly asked if my husband had been beating me up!! Eventually they went on their own.
Hope you find some answers for your skin problems and resist the urge to scratch
Hi,I have been diganosed with behcets for over 13 years now ..what started off as having tonsillitis every other week as a child turned into mouth ulcers every week then turned into what I can only ever descibe as my eye ball trying to pop out (well thats what it felt like at the time) for me what started the whole process of finding out what was wrong with me was having my tonsils out and my body not being able to recover the ulcers had gotten so bad I could not eat or drink I then started to get ulcers where no man should, it wasnt untill I collapsed did they start to take the test to the next level (cat scans a million blood tests) to cut a long story short it affected me in differnt ways
I had 2 blood clots on my brain.
my eye sight changed within weeks and needed strong glasses.
because of the drugs (mainly steroid based) I started to lose my hair, had temper problems and my food patterns had changed.
red spots that have something I can only class as sticky ooozzz
the only idvice I can ever give anybody is not to be a guinea pig I say this in regads to the drugs to try and controle it, I had tries so many that maid me ill or didnt do a thing and the side effects are just terrible ...stand your ground and find out EVERYTHING
Im from England but moved to Melbourne 2 years ago and its all calmed down a lot I still get ulcers (fortunatly only in the mouth) and I will be on warrfrin for the rest of my life but I decided a few years ago to stop taking the steroids as they are really not a nice drug to be on long term
I hope in some way this helps and I would love to talk to anybody who has this horrid disease
I have heard a lot about "Erythema Nodosum". I don't think it is what I have though. Mine are on legs(anywhere) and arms. They don't bruise. I think mine are just bumps that look like bites and I can't keep my hands off, so I make them look worse. It is probably why they ulcerate. I also wonder if this constant compulsion to touch/ scratch them is part of the fact that I suffer from anxiety as well. I also wonder if this is a side effect of the Cymbalta I take for the anxiety. I am just trying to find a cure for it.
Yes have had these for years too way before my diagnosis too. Like bites and yes I too am the worst itcher/picker..... The skin around them thickens and they become like thick bites/scabs and do scar a bit for a few months then seem to disappear eventually..... Thick and horrible skin where they are