I haven't posted for awhile...
I have end stage NEURO BEHCET'S DISEASE.
MY DOCTORS HAVE WAITED, UNSURE OF WHAT TO DO, AND VERY CONSERVATIVE - IF THEY DO ANYTHING!
Thursday, the 5th, I will get my first infusion of REMICADE. This should have been tried YEARS AGO! The NEURO only said he would set it up after I said, "I QUIT! SCREW THIS! NO MORE IRON INFUSIONS OR EMERGENCY BLOOD TRANSFISIONS. I HAVE NO QUALITY OF LIFE AND WE ARE ONLY PROLONGING THE INEVITABLE - DEATH."
I will try to keep you all posted about how it goes. If I have any side effects and how bad they are.
I know many of you wonder if YOU have to get REMICADE infusions, will it work, how fast and will you have side effects. Of course every one is different... But I HOPE, knowing some one that has, might help you decide.
Reading about it is one thing, questions and answers with a REMICADE patient, is different.
As usual, with me, no questions are "too personal". I am 65 and heard it all. I am open to discussion on everything BEHCET'S,THAT I KNOW!
( Even how to use an empty toilet paper tube, to urinate - without hitting 4 octives above HIGH C.)
We all share the same symptoms, there is no shame in discussing them.
Later, my BEHCET'S brother and sisters,