Infusions symptoms and conditions

I have now had 18 venofer infusions over the last 16mo.Each time I receive them, within hours I have severe swelling of the IV site and up my arm.And also have severe itching also.It seems to take a week or more for the swelling,itching and pain to go away? The IV didn't come out of my vein,so not intramuscular.Is this normal?Or is there anything I can do to help these symptoms not happen at all? Thank you, P.

Well, I have had 4 infusions for Ulcerative Colitis. I have had several side effects but none that seem to serious....I don't think. Anyway, I keep having problems with my ankles after each infusion. Once they swelled up and a large red spot appeared and I was unable to walk on it for 24 hours then the swelling went down and a week late it happened to the other ankle. The next infusion a blood vessel in my ankle swelled so large I thought it would bust I elevated it and that helped. Then swelling went down after a few hours but the area turned black and blue and took a week to go away. Now I have a cough and sour throat..... so I really don't know. I go for my next infusion the end of Sept. We'll see what happens then.

im just a kid. ive had 4 remicade infusions for chrones disease. and i have a terrible headache on the lower middle section of the left side of my head that spread to my left eyeball. has anyone else had these problems with remicade? or are my sleeping habits giving me these.

About 4 months ago I took 7 days worth of Levaquin after my sinus surgery. It was a preventative measure, I never had an infection. A few days into the prescription I started having tendon pain in my knees & ankles. I couldn't sleep, I was having nightmares, I was emotional, anxious and drained. My doctor told me to stop taking the Levaquin immediately. 4 months later and I am still suffering from entire body tendonapathy, neuropathic pain, joint pain, skin sensitivity, severe migraines, temperature sensitivity, twitching (muscles convulsing), basically my entire body hurts. Some days are a little better than others but not by much.

I have been to rhuemetologists, neurologists, pm & r doctors, physical therapists, acupunture, orthopedic surgeons, & allergists (in Chico Ca, & @ UC Davis in Sacramento Ca). NONE OF THE DOCTORS KNEW WHAT TO DO. My general physician actually told me to "go home and wait it out" because there was "no hope of finding help" (I'm not kidding). I've had tons of blood tests with fairly normal results. Thankfully I have a wonderful neurologist who has taken some interest in my situation. All of the other doctors told me that my case was very rare & that they had heard of such side effects but had never seen any patients with them! After some research on the internet I seriously doubt that my condition is as "rare" as they claim.

I am only 28 years old, I can't walk, I can't work, and my life has been turned upside down. I was very healthy before, I don't have a family history of health problems, nothing like that...it was the Levaquin.

Here is what I am currently taking: Lyrica for neuropathic pain, twitching, not being able to sleep etc., and oral morphine for the severe pain, Milk Thistle to promote glutathione (important because it helps your liver detox), Magnesium Malate (also helps detox), a multivitamin, vitamin c, and fish oil pills. I also attend acupuncture 2x per week (honestly feel some relief from it). Also, I heard that glutathione infusions are helpful but I haven't tried them yet. At this point I will try anything.

IF YOU HAVE HEARD OF ANYTHING OR ANYONE WHO CAN HELP WITH THESE DEVASTATING SIDE EFFECTS PLEASE LET ME KNOW.

~J.

I was diagnosed with pneumonia on July 6 and prescribed Levaquin 500 mg for 10 days. I took my last pill tonight and could not understand the pain in my right hip, red eyes which I suspect comes from the insomnia I have been experiencing since July 10. I am still having difficulty sleeping and tonight I feel extremely tire with discomfort in the back and shoulders. I wish I had read these comments earlier, I would have discontinue using this drug. I have not experience any depression, but lack of appetite, stomach pain and upset stomach. I have had intermittent diarrhea. How long will it take for this drug to get out of my system.

My 14 yo son has UC, he has had 2 infusions and now the MD wants to try to go without it and stay on Lialda only. Which sounds great, but for the past 2 days he has had a severe headache and fever, wanted to know if this is related or not its been 7 weeks since last infusion.

Reading all this horrifies me since I have been on Remicade for almost 4 years for Crohn's and a still unidentified Inflammatory arthritis of some kind. I will pray for you all. But, on another note and by no means an attempt to diminish the severity of each account in this blog, I have had no such side effects and for the most part have had great success until recently. My Crohn's is and has been in complete remission since the beginning of the infusions. However, I have had increasing inflammatory issues in joints between infusions. I get 5 vials and they give me Solumedrol in the IV. I ended up in the ER last night because my joints were all frozen up and it was just unbearable. They gave me Solumedrol and Morphine, and I am 75% better today. The frequency and severity of the arthritis issues has gotten increasingly worse over the last 6-8 months. I get infusions every 8 weeks, and start to have severe joint pain after about 4 weeks. All that being said, it is appearing like Remicade is still working brilliantly for Crohn's but is having little to no effect on the inflammatory arthritis. The steroid they give during the infusion is what I think is doing the job for the joint pain since I was a 10 last night in the ER, and I am 3 this morning pain wise after getting the steroid. My case is unique and frustrating to the Rheumy b/c my sed rates and RA factures and C-Reactives are all relatively normal when I am in tremendous pain. So, they just ran alternate tests the other day to look into things like Myeloma and so on. I don't believe that Remicade has done any of this. I believe that Remicade's benefits for MOST people greatly outweigh the risks, especially when you are incapacitated with Crohn's etc. But in my case, it just does not seem to be working for my joint inflammation.

Has anyone experienced multiple pulmonary emboli (blood clots in the lungs)?

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 was prescribed to take 30mg/day (Prednisone) to try to reduce the inflammation brought upon by Ulcerative Colitis. I have taken Prednisone before....up to 60mg/day, when I was first diagnosed with UC. I don't really remember all of the side effects I experienced, but I do remember my calves and feet swelling, a bit a of moon face and very little weight gain due to the UC. Does anyone have any suggestions to how/and when I should take the daily dose of Prednisone (early morning, with food...what kind of food)? Also, I would love to hear from anyone with Ulcerative Colitis and how they are coping with the disease. From their diet when in remission to during a flare-up! Thanks...

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

After being hospitalized for 10 days back in November, I was finally diagnosed with a fairly rare autoimmune disease. Treatment included 60mg Prednisone daily along with weekly infusions and other meds. I am now down to 20mg daily and dosage for other meds remain at the same levels as in November.

I am uncertain if the following were side effects of Prednisone or because I had lost over 25 pounds and was totally exhausted before going into the hospital.

While I was on the 60mg dosage, however, I was unable to concentrate on anything for more than a few minutes. I was extremely forgetful. It was often good for a hearty laught, but sentances and words constantly came out of my mouth backwards or made no sense (like I'd say "Didn't that happen tomorrow?"). I had frequent headaches. I was tired most of the time and slept a l-o-t, but when extremely tired, I'd break down in tears over nothing at all. I developed severe stomach problems, but that was alleviated by taking Nexium twice daily.

Now on the current lower dosage and after gaining back half the weight I had lost, the "side effects" noted above have either disappeared or occur far less frequently and I've not developed any "new" ones, except that my face has besome puffy within the past week or so. My ability to think and concentrate for long periods has greatly improved, but I'm still not as alert and do not react as fast as before I was hospitalized.

Hopefully, these, too, will be back to normal once I'm off all the meds. I'm uncertain just when that is expected to occur but I'm sure that depends on whether I experience any flare-ups or not.

I'm also curious - Does anyone know if any side effects can occur several months or years after Prednisone has been discontinued?

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've been taking prednisone for about a year, started with solu-medrol infusions of 1000mg for 3 days with a prednisone taper of 180mg a day for 7 and down from there, I have had 4 of these this year and now am taking 20mg a day, I've had many symptoms of taking so much pred, but it helps keep my vision normal and keeps the headaches away, weight gain, sleepless nights, now acne and just feeling bloated all the time are my main complaints, I am going to see another specialist to get me off prednisone, and will try another immunosupressant drug that dosent have near the side effects of pred, but all I can say is it works, but who knows what will happen to me down the road, I'm a 37 yr old male who feels like I've aged twice that.

My side effects did not start until i started taking NATRECOR INFUSIONS FOR CONJESTIVE HEART FAILURE. My blood sugar went up to 175 or 180. I stopped taking my TORSEMIDE 20 mg table in the morin g and took one before supper and my sugar yesterday was 116 before breakfast and 87 before supper. I was very constipated for the last three months. My body was really dried out from taking too much TORSEMIDE WHEN I DID NOT NEED IT. i DONT KNOW IF ANYONE ELSE HAD A SIMILAR PROBLEM. iVAN