Sick after Remicade

Are you pre-medicated with benedryl and steroids prior to the remicade infusion? My husband gets 40mgs of solumedrol and some benedryl to cope with the flu like symptoms that the remicade infusion gives him. Even after that, he has to take some tylenol for the next couple of days to ward off the fever, headache and body aches and pains that he gets with the remicade infusion. Since it is only once every 8 weeks, he deals with it. He gets his infusion on friday, and has the weekend to recover from it.

I am pretty sure without the pre-medication with benedryl and steroids, it would take him much longer, and it would be much more painful to get over each remicade infusion. If you aren't getting pre-medicated, ask your doctor about it.

Maybe your doc could also do some bloodwork to check for any anemia caused by remicade, or drug induced lupus, to make sure that you aren't having any drug induced reactions.

Hope you figure out what's going on soon.

PV

Pre-meds are a good idea if you have someone to drive you. If you don't you could ask your doc about doing the infusions at home with a home infusion service.

But I think you should also consider getting a 2nd opinion. I prefer a doctor who treats the whole person - not just the labs.

According to my son's GI, the science to test for antibodies to the biologics is not that reliable. He prefers to go on a combo of clinical presentation and labs. Doesn't sound like your doctor is doing that.

If your quality of life is such that you are spending 1/3 of the time you are supposed to be "well" being laid up - well that just doesn't seem OK unless there are truly no other alternatives.

Did you make it clear to him how debilitated you are after each infusion? Maybe it would help to make an appointment with that item as the only reason for the visit. Then you can have a very specific conversation with him about it without being sidetracked by other concerns.

If he won't listen, it is ALWAYS your choice to say NO, I won't continue on Remicade. You don't have to be angry or defiant about it, just firm and reasonable. It's your body not his.

Best wishes

I've been on Remicade for just about 2 years, my weight is up to where I started 20 years ago, 120lbs wahoooo . Over the 20+ years I've done just about everything a crohns pt can  , it started w an obstruction in my ileum, I was hospitalized for 6 weeks, that was my shortest stay. It seemed to be at it's worse when I was in my 20's, my Aunt called them the "traumatic 20's". They didn't really know what to do but steroid treatments or surgery as a last resort. I'm really happy we've come so far in the last 10 years w biologics or I would have had my second surgery 2 years ago. I'm also very lucky to live in Canada. They get you what you need and my Dr was on it, two weeks after my colonoscopy I was approved for the remicade. It was all I could do to get there as 5 days after my colonoscopy I flipped my car and have two compression fractures and a ruptured disc, that was fun!!   darn near killed myself on black ice, pitched the car end over end off a culvert, you can imagine my dismay as I was trying to avoid being hospitalized and there I was on the Neuro Surgery unit and my guts were ready to tear apart. Neuro surgeons know about the brain, they didn't know to much about crohns so I just wouldn't eat anything but yogurt and drink Ensure until I got out of there. I made it to my remicade appointment and it was like instant relief of everything!!!! Back pain decreased, crohns seemed to get better with in a 24 hour period, to bad I couldn't hold myself up on the toilet, I'm lucky my significant could take time to be with me, he was literally my back bone. I also suffered a stroke at the age of 5, why we don't know? It happened and I lost use of my right hand, arm and foot....the leg is like a peg lol. My foot doesn't move in my shoe except for spasms but I'm getting that taken care of w a round of botox to the right side of my body. I've had distonic movements since I was a child but now they've turned into contractures and have torn my rotator cuff so a parkinsons drug, botox and another injection is coming this Tuesday, YAY!!!!

So that's my medical history, keeping it short. I still have crohns as it reared its ugly head 5 years after the surgery. I also developed it in my esophagus, disaster from my 20's, yes another one. So two years ago when I felt instant relief I find it's not so instantaneous anymore. It turns out I'm anemic, I need infusions of iron so have been feeling just sick and short of breath. My GI asked if my periods were getting heavy and yes they are. Since Remicade is an anti-inflamatory is this why my periods are heavier? Yes I've been to gyno just last week, no worries about that. Everything checked out fine and they're sending me to ultrasound just to make sure there's nothing in there.

So since the summer, I had an infection which took an awful lot of antibiotics to rid myself of, it was in a saliva duct which made eating all the worse. I had the gland removed November of last year but the ENT couldn't get the stone out of my mouth, he expected it to just disolve and go away, well maybe in a normal body it would have but nono not mine . Instead I had this stone stuck and was scheduled for surgical removal, I didn't make it to surgery. They put me on one antibiotic that didn't work so I wound up in emergency and got a round of another antibiotic via iv to boost start me, w in 20 mins I was spitting puss but the pressure went down so I told him I could hold on till the surgery which was booked 7 days later. On day 4 I felt something hard protruding from underneath my tongue, I had been hard on the popsicles and it moved. It looked like a tooth coming through, so I closed my mouth and eyes and pressed real hard down on my tongue and didn't the rock fly and hit the the back of my teeth like a bullet . It was instant relief and I still have the frigger in a pill bottle, I'll never let that go. It tortured me for years!!!

Since the stone came flying out I had my Remicade infusion w in a week of stopping the antibiotics. I came home and didn't move for a week. Had migraines, vomitting just poison coming out of me. That happened in June, it's been six months. I just had my 3rd treatment of remicade since the nasty infection and I still feel exhausted, nauseous, crampy and joint pain. Not as bad as in the summer or Sept so I assume I'm on the mend but when will I jump off the remicade and back into action the next day?? Yes I work, I enjoy distracting myself from all of the above. I'm mainly working for the hospitals now, I used to run a home rental agenvy for 10 years but after that accident I've found it harder driving and climbing through houses so I'm giving it up for the hospitals. I've applied for a couple jobs now as I'm just a casual in a great rural hospital in Musquodoboit Nova Scotia. So I guess I'm asking if my crohns is still on the fritz due to anemia and all those antibiotics in the summer months? I'm tired of being tired and sick feeling. Any words of wisdom would be greatly appreciated.