Anyone else have a Behcet's body that attacks everything it comes into contact with, besides just itself?

[behcetshurtsbeyondwords]

Hi everyone,

I sort of started discussing some of this in another post, so sorry if it sounds familiar Lol. I'm just wondering if its a normal occurrence with Behcet's Disease to have a body that is super-reactive to everything. I know and understand that with any systemic autoimmune disease, including Behcet's, the immune system is over-active and over-aggressive towards itself (and the rest of the body's tissues. So because of this, the body seems to be in an aggressive state of being that is constantly attacking things.

But I'm wondering to what extreme of this is normal. I suppose there really is no "norm" when it comes to Behcet's, but my body seems to always be in a super over-reactive state where its constantly attacking not only itself, but pretty much everything else that comes in contact with it.

Even long before I was finally officially diagnosed with Behcet's, I just knew that I had some sort of active autoimmune disease because my body seemed to always be on guard and under attack-- for example, whenever I would start a new med, not only did I have to worry about potential side-effects related to the drug specifically, but I also had to worry that for a good couple of weeks while my body is adjusting to it, I would become extremely ill with my immune system going into super over-drive. Immediately after starting a new med, I go into a really bad flare and attack of all of my symptoms.

I have still noticed that even today, after being on most of the same meds now for at least two years, my body will still go into over-drive immediately after taking a pill. So if I take my pain meds, then I have to deal with a good twenty minutes to an hour of severe pain and swelling attack, until the drug starts to kick-in slowly and then it starts helping to decrease the pain and then the attack begins to settle. I notice the exact same thing right after taking my Prednisone (which isn't even a therapeutic dose-- its a very low-dose as replacement for cortisol) my body immediately starts swelling all over, the pain gets really intense all over, and sometimes my skin will even start breaking out and burning in pain. Then after about half an hour, things settle and my skin will completely clear-up.

It's the strangest thing. Its almost as if my body detects the drug and says "NO! you aren't going to slow me down!" Lol. I honestly think my body starts trying to attack the drug as well as itself.

I do know that this does happen with Behcet's because my rheumatologist explained the reasoning why I need to take an immune suppressant drug along with the Infliximab infusions, is because of the behcet's, my body will start producing antibodies against the drug itself and flush it out of my system. So I guess its not too far fetched that my body tries doing that with all medications. He also explained to me that the body with Behcet;s can also devlop antibodies against certain vaccines, and will therefore attack them, so they don't work. Shortly after I was diagnosed, I was seen by an immunologist who tested me to make sure my vaccines were all still working and that I didn't have any antibodies to them.

My body also seems to be super over-reactive with simple things touching my skin like a light stroke with my finger-- back pre-diagnosis days, an immunologist said I had idiopathic "hypergraphism" which basically means my skin is sensitive and over reacts to simple trauma-- obviously now we know its not idiopathic because it commonly occurs because of an underlying systemic autoimmune disease.

Sometimes if I scratch my skin, it will actually start being attacked as if becomes inflamed and very red, and then will begin to blister and ulcerate. I have to be really careful with my skin because any little trauma to it can end up causing a big mess.

My body also reacts crazy to heat-- either if my body temperature goes up, or I am in a hot bath or its very hot outside-- my body will go into a bad attack of swelling and pain and my skin will start acting up, and my hands will be attacked badly as well.

Another strange thing occurs with the trauma to my vessels with a needle, either for blood work or an i.v.-- I've had it where the i.v. catheter was hurting so bad and the skin around it became very inflamed and red and was thumping, all of a sudden, my body basically just pushed the catheter out of my body and it sent flying across the room and almost hit a nurse! then blood was streaming out of it like a fountain. The first time this happened, I had no idea what was going on and my poor nurse was actually on her very first nursing shift ever... so she panicked and screamed and just stood there while my blood was shooting out of me. It was so incredibly painful too so I was crying and screaming, and then yelling at the nurse to do something. The next few times it happened, it was more of a funny situation because I knew what was happening, so rather than screaming, I was laughing.

My body did this after my surgery I had five years ago-- I had a drainage tube in my abdomen right below the 17-inch incision, and it was day 10 after surgery... the skin around the drainage tube was starting to look really nasty and they were afraid it was getting infected. It was really hurting with stabbing pain and was actually thumping.. so they decided it was time to take it out....

Well they ended up letting a medical student do the procedure, and he did something wrong during it--- I felt the most horrid pain I have ever felt (it was even worse than the pain I felt after waking up from the surgery, with no epidural numbing my abdomen!), and while he was pulling it out, he forgot to do something to the tube which would stop the pressure from it being pulled inside me, to help release it. Its like a suction into my body, and he started trying to yank it out with all that pressure behind it. I was screaming bloody murder, and then all of a sudden my body just shot the thing right out... it literally just slid right out and went flying.

The med student was actually crying because he knew he had hurt me and that he did something wrong... but the amazing thing was that my body didn't want this thing in it anymore, so it helped to push it right out. The surgeon had explained to us that whatever it was he forgot to do, the tube shouldn't have came out of my so easily. It was the craziest thing ever. They ended up doing an ultrasound of the area to make sure nothing had been damaged. But immediately after the tube was out, the area no longer was thumping and the stabbing pain turned into ore of a bruised feeling, which was so much more manageable.

I guess what I'm just trying to understand is if this is just part of Behcet's, and not just my body being extremely weird.

Has anyone else experienced anything similar to any of these?

Sorry this got a bit long. Thanks to anyone who has the patience to read all of this!

-Jenna

[spirojo]

Although not as extreme as yours, my body tends to hyper-react sometimes. This is mostly related to my mouth. If I eat something crunchy and it pokes my mouth, I get an ulcer. Any dental work; ulcers for weeks. Bite my own cheek or tounge, guarenteed an ulcer.

I also feel like any type of autoimmune disease causes you to have random, seemingly unrelated bizarre "symptoms." I know people with ulcerative colitis and lupus who have the same type of issues.

[andreafm]

I know exactly what you mean as I have always had what I call an extremely overactive immune system and have great difficulty with medicines seeming to work in the beginning and then reacting against me. Like you say almost as if it is a battle between the decease and the medication with me in the middle. I also have hyper-reactions to things like the blood tests and cathaters etc where the body is almost pushing the catheter out of my body and festering around the site, within a very short time after it going in.....I have this with my infusions of infliximab which I have every 8 weeks and the sores and bruises are much larger than the site and are still there to show right up until the next one and beyond. They now keep using different sites and the same thing still happens and can't work out why it is happening.

When I had pneumonia and I have severe incontinence/retention... I had a permenant catheter placed in as I was stuck in bed under ITU. My body constantly tried to get rid of it and it was agony to leave in, so much that I kept on and on about taking it out....this was dismissed by the hospital doctors and nurses until it actually bled and tore me in it's attempt to work it's way out and they couldn't believe it...it was put down to extreme spasm.

I don't seem to get actual colds or flu's even when everyone else around me is dying of them, but seem to be in a permenant state of virus symptoms. If I do catch a cold or flu it is really really bad.....also have the heat problem along with extreme cold which is not attached to the weather or climate etc.

Can't say if it is a behcet's thing as such but would guess it is auto-immune though.

Does this help??

[behcetshurtsbeyondwords]

Thanks to both of you for your responses I also get milder versions of it, where areas with scar tissue from previous ulcers will continuously become inflamed and red, and new ulcers keep re-appearing in the exact same spots. When I had my bile duct/gallbladder/pancreas surgery for a cyst, the incision ended up being almost half of my body (I think its about 17 inches) and the scar is sort of bubbled out, I guess because of the location of it (its directly below my ribcage, with a straight line on the one side extending upwards toward my liver, and on the left side, its like the surgeon had to make the incision bigger, so he made a curved cut extending from the center of abdomen (matched up to the other side) and extends outwards on the left side and curves down. Its a pretty interesting looking scar, at least I can joke about how pretty cool it is Lol... anyways, it began healing really good and never got infected (which surprised the drs and nurses because of how big it was), but then within a few months afterwards when I began developing more and more Behcet's symptoms, the scar would inflame and turn an ugly looking reddish-purple colour with red dots and little bruises around it; and it would actually start thumping and would hurt real bad-- I really think my body was attacking the surgical scar every once and a while. Since I've been on Infliximab, this hasn't occurred again, and its fading a lot.

Yes Andrea what you have shared is very helpful thanks. I understand what you mean about feeling as though you always feel as though you are fighting a cold or flu bug, but don't actually become sick with it-- I often describe the way I feel as though I have the true influenza virus (on really bad days) or that I'm fighting off a cold bug (on better days).

I also have issues with either extreme of temperature. At 17 I was diagnosed with Raynaud's, which was so severe affecting my arms, legs, hands, feet, and my lips, ears, and nose-- it was horrible. But then overtime, I started noticing problems with the heat as well, and rather than always being ice cold, I was always burning hot and swollen. I still have Raynaud's and trouble with extreme cold, where my nerves and muscles begin spasming and shooting pains all over, but then I also have the other extreme, with erythromelagia-- where the blood vessels in my hands dilate and allow too much bloodflow to them, and causes them to swell so much that the skin dries up and cracks open and bleeds and causes them to be burning hot (you can actually feel the heat without touching them) and the pain gets unbelievable. Only with Autoimmune can you not be able to tolerate heat or cold...