WOW! I HAVE A LOT OF PEOPLE THAT LIKED MY POST AND ARE NOW FOLLOWING ME! I GUESS YOU ALL WANT TO KNOW WHAT TO EXPECT IF YOU GET REMICADE OR AN INFUSION.
Well, I had my first infusion on Thursday Oct. 5th. (Next one is Oct 19th, then Nov. 30th.)
It went well, the staff is very kind and even with tiny veins that roll, collapse and blow out, they got it started in one stick. The infusion took about 2 hours, I was given 600 mg Tylenol (acetomeniphen) and 25mg of Benadryl, (difenhydromen). They wanted to give me 50mg but I refused. I took a book, snacks and a soda. Plus a blanket. I slept, because benedryl knocked me out.
I had some Trigeminal Neuralgia for a day or two after and felt a bit blah for a couple of days. I don't know if it was because of the REMICADE, or weather changes we have had. (I am very sensitive to falling Barometer changes. I know I will go "belly up, in pain, in my recliner!")
Today, I don't feel any better or worse than I have. I hoped it would help the arthritis. There are reports of just one infusion- helping spondyolitis. But I guess not in my case.
I hope being a "lab rat" for REMICADE infusions and reporting here, answers any questions you may have about what to expect, if you are going to receive infusions. I will do my best to answer any questions anyone has.
Please remember, I have a very bad case of Neuro Bechet's, with all the rare and worst symptoms possible. While I did not get noticeable results after my first infusion - you possibly could. Maybe just my telling you about telling my doctors, "I Quit!" Will help some of you stand up for your rights as patients and demand that your doctors do something, anything - to help you.
There are only about 10,000 cases of Bechet's in the USA, many less Neuro Bechet's cases. So, doctors don't know what to do, when there is little research and it is old and out of date. Plus, very small studies, because it is so rare.
Meanwhile, I am happy to be a "lab rat" and report back to all of you, in hopes you learn through my experiences.
Bechet's affects everyone differently, the symptoms and severity are as different as the people affected by it. My experiences will not be the same as yours, but you might learn, if something is new to you, like infusions. What to expect the procedure to be like, and not be nervous or afraid of the unknown. I am honest, open and approachable. If it were "the worst thing ever done to me", I would be honest and tell all of you why I thought it was so bad. (Maybe if it is a fear of needles, that made a "Spinal Tap" seem much worse and awful, when it really isn't that bad if you aren't afraid of needles.) Then, you can judge for yourself, an individual, with your fear or lack of fear for certain things.
(I have sent some private messages to a few of you, that were afraid of your first MRI, or other things. I hope my input helped put you at ease.
That is all for now. I will answer any questions and post any changes, if I start feeling any different, or after my next infusion.
I wish you all good health,