Remicade and infusion

I had my 4th infusion about 10 days ago and had a really bad reaction. I had just started the infusion when I felt uncomfortable cramping in my upper left arm then the pressure in my chest started. The nursing staff noticed right away and called the doctor who ordered them to stop the infusion. Just as they gave me a shot of benadryl to help control the bad reaction, I started to shake and pass out. Since that time, I've had terrible headaches and a very painful stiff neck. So painful that I haven't been able to sleep. It has been 10 days and I'm still experiencing the stiff painful neck and terrible headaches. I won't ever take this again. I'd rather suffer with the affects of RA than with these horrible headaches.

a full week after my first remicade treatment, i suddenly developed a very severe headache, followed by a stiff neck, a stiff left arm, a sore jaw where i couldn't open my mouth very far and i could not chew, then developed a fever, chills and itching. It came on fast but also subsided a good bit within about 12 hours. has anyone else experienced something like this, a full week after a treatment?

Remicade has totally changed my life. I could barely walk due to ankylosing spondylitis and I also suffered from severe ulcerative colitis. I still have pain, but nothing like it was 10 years ago. The ulcerative colitis has been in remission since my first infusion. If I die from taking Remicade tomorrow, I will be die happy. I was ready to die when I started the infusions!

Centocor, the maker of Remicade, aggressively pushed physicians to set up infusion clinics, write for the drug and promised huge profits.Most of these infusion suites are run by nurses. The drug dose is calculated by a nurse and mixed into the iv bag by a nurse NOT A PHARMACIST. The drug, which can put patients at risk for serious infections and tuberculosis is not even mixed in a sterile IV hood !!! It is mixed out in the open air and exposed to contamination. In the meantime,Centocor downplayed the severity of the side effects. This drug actually caused LUPUS in a patient who subsequently won $19,000,000 in a lawsuit. The drug can greatly increase the risk of lymphomas and blood disorders with fatal outcomes. But the literature does not adequately educate patients and physicians on how to properly monitor the drug! The drug can cause memory problems, visual changes, and increased sed rate and increased c-reactiv protein.

I have been on it for two months due to severe psoriatic arthritis. I'm taking the max infusions every four weeks, methotrexate injections and prednisone. I'm tired, sleepy, sweaty and somewhat nuts a lot. However, after last week infusion, I have some type of rash-little red dots that feel like pin pricks that itch somewhat. I feel like a thousand fleas are attacking me all at one time! Has anyone had this type of feeling? PLEASE reply-it is driving me nuts.

After 2 years on Remicade I slowly developed SEVERE JOINT PAIN all over my body, including my jaw. It's so bad I can't walk and do simple tasks. I have not been on any other meds.

The only thing that cures the pain and allows me to go back to work is another infusion. It's like CRACK.

Now the DR. has scheduled my infusions closer together and the pain just comes on sooner, like the medicine doesn't last as long.

I want to stop treatment in the worst way but I have been reading that the side effects do not go away - even after treatment has stopped.

Has anybody here discontinued their infusions???? Please help!

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?

My son has side effect following third infusing...headache, acne like pimples, rash, mood swings, lose of short term memory, frequent urination, stomach spasms, and over all total body ache...now six weeks after last infusion...seeing two dermatologists, his regular doctor, and having to take a two week leave from work...my son finally showing improvement..his gastro Dr. wants him to go on with treatments of remicade...No, No, No...

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.

I'm on my third infusion. Up till recently? It was a wonder drug. I got all my energy back, no more random joint pain and everything was going great. Then my third infusion happened. And I get jimmy arm. It's like jimmy leg, where you can't stop it from bouncing. Only worse. It's like my arm just won't rest. The next night? Both arms. The night after? Chest pains, racing heart, breathing shortness, all kicked off at 3AM with a lack of sleep. This is all very new to me and I'm waiting to hear from my Rheumatologist if I should go to the hospital or not.

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?

I had my first infusion of remicade with the benadryl on Tuesday since then I have had a very bad headache, stemming from the back of neck all the way over my left side to my eye and also a very painful stiff neck. I am literally inches away from surgery to remove my large intestine and this was my last chance. The good news is that it seems to be working for the UC but I am not sure I want to live with these headaches it is awful.

I have had one infusion of Remicade, and I had a headache and dizziness only the first day.But my Hemoglobin dropped to 74 which is critical low, is this common or what??

Remicade did wonders for me, my Crohn's disease went into remission. Still have muscle pain over a year after not taking it. Maybe that is from the Imuran. When I had my infusions I had to have Prednisone before & during because of an allergic reaction.

Terrible headaches after infusion two. The headaches are intense and in the back of my head. They actually cause my neck to stiffen. They are also accompanied by blurry vision and double vision-especially at night. I'm wondering if these side effects will go away or if they will continue as long as I'm receiving Remicade treatments.

Muscle pain in arms,numbness in fingers and hands, nausea and stomach pain within 4 days after each infusion (I have had 3 infusions so far for Crohn's Disease)

I have had four uniary-track infections from Jan. 07 until Aug. 07. I have runny nose, allegery type sympons. lost taste/smell senses, burning/numbnes/tingling hands feet,muscle/joint pain feet,knees,hips, back, shoulders,upper arms, hands,dry mouth, dry eyes, vision problems/blurred/double vision and times cannot read news print,increased heart pallpation,insomina,headache. had to cancel last infusion due to unary-track infection and while on antibotic. In the past two weeks, i have noticed decrease in most of the above sympons, except burning/numbnes/tingling in feet, and swelling in feed and hands has disappeared. I was due for infusion today, I told Dr. of disappearing sympons, he delayed another two weeks. I also have been diagnoised with chrons disease. I want to continue to see how I feel in next two weeks, before scheduled infusion, other headache,nausea,stomach abd. pains.

I had 2 remicade infusions. I received benadryl 50mg IV before first infusion and had a terrible reaction to it. Rigor,shaking..at least an hour and while this was going on they administered remicade.
Bad headaches and some back pain ,nauseau first infusion. Infusion 2 neck pain,intolerable sinus head pain. Went to osteopath and most of the pain went away so it was from the stress of benadryl reaction. Hemoglobin dropped from 12 to 10.4 in 5 weeks but I also have genetic thalassemmia(anemia) and my diet ..well..almost none..vegetarian and iron content not as soluble.
Checked for rectal bleeding, urinalysis etc. All fine. Another cbc tomorrow and now dr. says if it's back up he knows it's the remicade and wants me off it(been stuffing myself with red meat, and all iron foods for nothing it seems) and if it isn't still no remicade. My skin has started clearing and now I will be very depressed once again after all of this..never mind the expense since my insurance company would not cover it.
Anyone else experience drop in hemoglobin drops?
Cierra2

I had my second infusion, and a debilitating headache came on. I feel very grogy the day after and as of yet no real change in the way I feel. I suffer from Sarcoidosis, and my doctor feel that this will help with the immflamation. I was worried about the headaches, but I see that several people have experienced them also. If anyone is positive that the Remicade is the cause please note. I'll be checking in from time to time.

Bamm

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.

Had my infusion yesterday about one week earlier than scheduled (ie five weeks rather than six). Was fine yesterday but this evening my head started to "swim" and I feel a little unsteady on my feet.
I don't know if this is Remicade or some interaction effect.