Behcet's Syndrome Society
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Hi just wondered if anyone else gets leg ulcers? I do but usually a small outbreak of a few but at the moment they are in abundance. I have also got lots and lots of little blood blisters all over my lower legs. Some have become ulcers otheres are just slowly going. I haven't had a bad flare on my legs for years and wondered if anyone else gets this?




4 Replies

HI Angela, Yes I had this about 20 years ago and sorry to tell you it lasted for about 2 years. They were also on my heel/lower leg so very difficult to walk. These were the reason I got a disability badge....with 3 children one only a baby it was I God send. They have never returned and I had no treatment because back then nobody had any idea what was wrong with me, so I just trundled along on my own. I did not renew the badge and it is only recently for different reasons I tried to get one but was turned down. That's life with this illness. I know this probably wasn't the news you wanted to hear but......there has been much improvement and I'm sure you will be able to get treatment and any other help you may need.

Hugs and Smiles



I have had leg ulcers before, and the last ulcer I had was on my buttock. It was around the area that I have a belt to hold up my jeans and having a fat tummy means my stomach area is normally bigger than my hips so I have to wear a belt and where it rubbed, a horrid ulcer broke open. I went around with very deep ulcers on my arms and some of the holes went right down to the bone and you could see the bone sheath/membrane, and tendons travelling across it but the muscle was rotted. On one arm, a very large ulcer had a massive tunnel that joined into an ulcer next door and the whole forearm caved in from the wrist, half way up the forearm and a couple of inches from the elbow.

The import thing about ulcers is trying to get the bottom layers to heal first. Often with overactive immune systems the healing process can appear to be speeding up, but what can happen is that skin tries to heal first whilst the deeper layers are still moist. When that happens the tissues deep down can continue to rot underneath the healed skin, and then the whole thing can cave in and be bigger than it started. Ulcers like mine were often where veins had died off, from clot or inflammation, and then if it is dying tissue and rotting the bodies way of getting rid of the matter is to make a sinus tract for it and the ulcer is described as 'punched out' they can appear perfectly round in the shape of a vein. My surgeon measured the sinus tracts by inserting metal rods, and they would often go in really deep as they were following the path of the old vein.

After about 5 years of rotting arms and no sign of healing over I came to the conclusion that packing the holes and then wrapping in bandages, which the community nurses did daily, was actually just making a closed and moist environment for the tissues to rot. I took the radical decision, whilst visiting my brother in New Zealand, to remove the bandages and I went swimming in salt water on a notoriously clean area of sea (with about 500 dolphins!) and then left the holes to dry out in the sun....after about 5 weeks of this, my holes started to harden off and dry from the bottom up and it kick started some healing.

I often find that the advice given for packing and wrapping ulcers just does not work for me and they linger. I now ignore any hospital advice, which I suppose is the wrong thing to do, and I leave my ulcers open to the air. Interestingly a friend's dog who has developed ulcers has been told by a vet not to wrap or cover them and leave the air to get to them. However, in human medicine I found that a lot of docs and nurses were terrified of bugs getting into the ulcers and think wrapping is sterile. However, having tried that for 5 years. I found the bugs got in there anyway and that once they populated the ulcers they multiplied like crazy if it was covered and wet. Most of them were anaerobes. I also found that when I was on antibiotics to kill of specific type of bugs, once those had gone, new and much rarer bugs would take their place. I had all the types of staph and strep living there but also at some point had diptheria bugs living in my arms as well as colioforms, campylobacter and gut bugs too.

I have heard that Manuka honey dressings are now available on the NHS and can be helpful by promoting good bugs.

What can be difficult when treating people like us is that often a Behcets type inflammation or immune problem can be responsible for triggering the ulcer, but once that ulcer is open then anything can come along and colonise it. And often, nurses or docs will assume that it is the bug that is the problem which started the rotting or caused the infection, when in fact the infection of the ulcer is secondary to the cause. I often started an ulcer outbreak by having a non infectious inflammation based cellulitis, especially after having venflons in for IV fluids or meds. My body reacted to the trauma of having needles in veins, and then the inflammation response looked like it was a normal cellulitis infection when it is not. Then once I was infected, medical staff would make the assumption that treating the infection will make the inflammation go and if I was in flare up mode, that method would fail. Once it failed often staff would be looking for something or someone to blame and often it was either myself or my partner that would be accused of interfering or making matters worse. This is why I was scared to remove or change bandages without permission, otherwise a flare up would be blamed on me. However, once in New Zealand, I thought it was worth trying a different approach and it worked.


Hi Angela,

I too get leg ulcers, not loads but a few really big ones on the front of my legs below the knee. Usually the size of a 50p piece. They take ages to heal and have massive scars when they do so I am very conscious of showing my legs in public. The thing I don't understand is that my ulcers always come back in exactly the same place all the time.

Hoping it all improves for you soon.

Take care, Jo x


Hi Angela,

Just last month I had an outbreak of ulcers on my right leg. They just appeared overnight and took quite a while to go. I still have the scars of two of them. They were not nice and I don't want anymore but i'm sure it will happen again. I have lots of small red blood spots on my back and some of them are getting bigger and sometimes they bleed. I was told by my GP that this is vascular and part of my bechets.

I hope it improves for you to.



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