Remicade and doctors

Just got home from hospital. they drained a liter of fluid off my heart. I have been off remicade for almost a year now. I have posted many side affects on this list. I had to take drastic measures to get off Remicade. The sack around my heart had grown thick due to the pressure it was under. My many other side effects including soreness that moved all over my body and almost every other one I see listed here seem to be enough to pull this drug. I wish someone would take this serious. I need help with getting this info into my lawyers hands. because one week ago the doctors told me I was lucky to get the surgery I got. He said I was hours away from Death. Some of my side effects have got better but I still suffer from taking this drug. Don't be fooled by the short relief this drug can give. I was on it for 4 years. never again

I have had 1 remicade infusion so far for ulcerative colitis. The next day a bunch of spots appeared on my lower legs. There were 30-40 of them, small, roundish, purple/dark red. They looked like blood spots under the skin.
It wasn't a rash and they didn't itch or hurt. My doc had no explanation, and I haven't heard of anyone else having this reaction. They checked my blood for a clotting problem and didn't find anything. The spots faded away over a week or so. My next infusion is in 2 days, so we'll see if they reappear.
I have also been experiencing a weird kind of insomnia where I am so physically antsy I CANNOT keep lying still, I have to shake my body or kick my legs or something. I read up on restless legs syndrome and the symptoms sure sound like what I am experiencing. I don't know if it's connected to the Remicade - I read that iron deficiency can also cause it and I am anemic due to the UC. But since Remicade can disturb the central nervous syndrome, it seems possible. Anyone else experience RLS with Remicade?

Now a new side effect, I have posted other side effects that were enough to get off the remicade. I went in and had another surgery because the side effects of this drug was killing me.{see other effects I posted under Jbill} So now the Doctors are looking into Brain damage. I am going to have a MRI done to see if this is a reality, I feel as though I have lost my wits. this is not something that I came up with, it is starting to show up in others and is talked about among the doctors that treat us. I used remicade for approx 4 years and feel like it is a dangerous drug. It can work pretty good but would not take it on a regular basis. I will not take it again.

Hello, my name is Rob and I have been on Remicade for the past 5 years. I had a reaction to my first Infusion, shortness of breath and feeling flushed. They then added Benadryl to all future infusions and everything has been fine until this last infusion in April of 2008. Halfway into the infusion my face became flushed, the person adminisitering the Remicade said it was hives, this was accompanied by tightness in the chest and headache. They stopped the infusion, gave me some Benadryl added to the IV, that did not work, they then added Solu-Medrol 125MG into the IV and it seemed to reduce the effects of my reaction. The infusion was completed and I went home. Upon arriving home I looked quite pale until that night. My face became red, almost as if I spent too much time in the sun and I have had a headache followed by chest pains. This condition has continued into the next day but it does not feel severe enough to go to Emergency. Should I be concerned or will this pass? Is it possible that I have been on it so long that I am now building up a tolerance to it?

My experience with Remicade has not been good. On one hand it did help with the crohns. On the other I developed weakness and tingling in my arms and legs, joint pain, ankle swelling, I have difficulty walking now. I also have numbness on the side of my face and occasional sharp chest pain. I find I am very depressed. I'm at my wits end. It is horrible bing in constant pain. I'm thinking of just going it alone without any medical help. I was better off as a 117 pound, 5-'9" lady with only crohns to worry about. Sure swallowing anything felt like glass but it beats this.

I have had numerous remincade infusions over the last year or so, and for the last six months I have been fighting an upper respiratory infection and persistent cough. I am now convinced it is a side effect of the remicate that I was not warned about in sufficient detail. This has become a major problem and I will probably no have any more of the infusion, although my Crohn's in now out of control. Has anyone else experienced upper respiratory disress, cough and sinus problems following remicade infustions? email me with your information. Thanks. Max.