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!