Remicade and infusions

I have been put through the wringer with Crohn's. 15 surgeries, all of my terminal ileum removed, 1/3 of my large bowel removed, etc., etc,- Those with sever Crohn's know.

I spent years on high doses of Prednisone, Imuran, Sulfasizine and other drugs and nothing worked.

I was even retired from the US Air Force due to its severity.

Remicade has help tremendously. However, some of the side effects listed above, I have also been through. Some of them, have been explained through other factors and those attributed to the Remicade I take other meds to offset them.

For example, Head aches. I figured the head aches were from allergies that I have had for some time. I attributed some of the headaches to the Remicade. The head aches are very sever after my infusions and decrease to a dull roar after that. I take four aspirin and Sudifed PE and this leaves me with a dull roar shortly after the infusions and does away with them till the next infusion - perhaps this will help some of you.

The muscle soreness is horrible and I take aspirin or Tylenol, but that barely takes the edge off.

I started get those little red dots. Then the dots turn to blisters. I get these on my hands, feet and scalp. My GI Doctor said it wasn't the Remicade, but a Dermatologist showed me a recent article that should Remicade could cause Psoriasis. I take Clobetasol Propionate for these and it has cleared them up.

I took the Remicade years ago and then it was stopped - it was the way it was done then - not constant, just three doses spread out over three months.

I got the tingling fingers during those. A neurologist attributed it to the Steroids I had been on. The nerve damage is permanent.

A few years later, they started the infusions again and I experienced no muscle soreness, headaches, etc. and it did not help the Crohn's as it had before. When I talked to my GI doctor he showed me a study that people build anti-bodies to the Remicade over time. They doubled the dose and it started working again. For those who are experiencing the Remicade not working - perhaps this is what has happened to you.

I get the mood swings, but had never considered it might be the Remicade. I will talk to my doctor about this one.

I have the blood pressure decrease during my infusions, but it has not been sever.

More recently, my joints have begun to ache and initially the Remicade had helped to stop the minor joint pains I already had. Come to find out, I have had bone thinning due to the Crohn's.

The one symptom I have started getting this week is random, sever pain in odd locations - not joints.. They have been deep and feel like they are in the bone. One midway up on my shine, one midway down on my foreman and one in my right thumb. Has anyone experienced this. The pain has been horrible and it does scare me.

I also suffer from depression, but have had it for years prior to the Remicade treatments.

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!

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?

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 have been taking Remicade for years. At first it was getting the job done. I started having severe pain that seemed to migrate to different places in my body. Sometimes the bottom of my feet would get so tender I could barely walk. My finger would bend while sleeping and I could not straighten it for days and it would hurt real bad. Knees and ankles would do the same things and then move onto other parts of my body. I thought it was more of a tendon problem, but the pain could also be in any random spots on my body, like shins or maybe a random place on my back. My wrists seem to be a favorite place too. The pain can set in fast and sometimes leave fast. Prednisone is the only thing that seems to help these symptoms. I have been taking 5mg a day for years and when I am having problems that is not enough. I went to a Rheumatologist and he says it is not the Remicade but another antimmune problem. My family doctor thinks it is a side affect of the Remicade and I tend to agree with him. I am going to have my damaged pouch removed in hopes of getting off all medications. I have been living with a colostomy bag for the past three years and it is the least of my problems. Before that I had all my large intestines removed and a pouch which worked well for approx 15 years. I am one of the early people to receive that kind of surgery. I can only pray for all of you that are suffering and lend hopeful advise to your journey.

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.

Remicade did wonders for me, my Crohns 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.

Had 8 infusions that helped a lot,but then things took a turn for the worst. During my treatment I GOT BUTTERFLY RASH ON MY FACE(drug induced lupus). I had small red bumps everywhere I have hair. My body then and still year latter always feel tired and ache. In April of 06 I went to have my colon removed, because the Remicade stopped working, and took my immune system down to nothing. My body could not fight off the infection. Four day after the colon came out my doctor had to open me back up. I was full of infection, it poured out of me. They took my innards out and washed them. Remicade and a weak immune system gave me sepsis infection. The infection clogged my heart and gave me a major heart attack. I was put in a coma for 4 days. They had to continually flush me with water and antibiotic. I did not remember the first 3 weeks of the nightmare. I had a respirator to keep me breathing for 3 weeks. Then a track for two more weeks. I had to be feed threw a tube, go to the bathroom using a catheter. I lost a total of 85 pounds and spent 41 days in the hospital, because of infection. My wife and daughter had to help me up two steps to get in my house. I was suppose to have my surgery April 06, get second surgery June 06 to get rid of the bag and use the pouch the doctor had constructed. Its 7 months later and the healing posses, because of the REMICADE has been so slow I am still waiting. I have a scope up my butt every 6 weeks to check the progress. I thank the Lord , doctor and my wonderful wife I am alive today. Remicade can be deadly, as my family doctor said its like playing with fire cracker. By the way I am 42 years old, my name is Mike H. from Lake city, MI. If you are on Remicade please keep a very watchful eye. If you get a infection , REMICADE has lower you body's ability to fight back. I wish the best for all who suffer from illness, GOD BLESS.

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 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

Originally diagnosed with PMR and was taking prednisone in high doses for 2 years with ok results, except that as I lowered the mg of prednisone the PMR symptoms returned. New doctor diagnosed RA instead and put me on Remicade. After 4 infusions I am having severe muscle pain in my upper right leg. And on occasion the beginning of the same problem in my upper left leg. Affectsmy mobility and I am taking large doses of tylinol & motrin for the pain. Doctor says this is not a side effect of the Remicade. At first I believed him, but now am having doubts. Anyone else have this side effect?

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.

My daughter's doctor is pushing very hard for her to be on Remicade for her crohn's. After researching it on the internet I'm against it. T.B., M.S., deadly fungus infections all being reported. 2 hour infusions. Bad headaches. Not for my beautiful 19 year old daughter if there is any other way. I also suspect the profit motive for her doctor. The nurse can administer the treatment at $25000 per year while the doctor goes on yet another europeen vacation.
Am I wrong?

I have received two infusions. I get headaches, muscle pains, back ache, and today I had a sudden nosebleed for no apparent reason. I can cope with the back and muscle aches, because I have had them for years due to arthritis, but the headaches are going to kill me. Nothing seems to help them. Can anyone else share any thing on this? Is it because of the Remicade? Any help would be appreciated. Thanks, Mickey