Remicade symptoms and conditions

I'm 15 years old and i've been taking prednisone for a few months, and from what i've read i'm on a really high dose. i was diagnosed with rheumatoid arthritis and another autoimmune disorder concerning my muscles at the same time. my doctor told me prednisone was my only choice; it was either that or i would lose the ability to walk. he told me there'd be side effects, but i had no idea it'd turn out like this or i would have fought harder for another course of action. i started out on 30mg twice a day, and since then was weaned down to 20mg twice a day and now i'm down to 30mg once a day. i've been looking up a bunch of information trying to figure out if there's a way to lessen the side effects or any hope at all that they will get better. apparently there isn't much. after reading a bunch of these stories i gotta say i'm not feeling great about this. i totally understand everything everyone is going through. i'm sure you can imagine what it's like being smack in the middle of high school with a huge puffy face, acne so bad on my face, chest, back, neck, and shoulders that wearing a bra could put me in tears, and mood swings so bad i've lost friends over it. everyone knows how brutal high school can be, where appearance and attitude are everything. and i try to tell my doctor about it and he literally looks at me like i'm a whiny teenager and says "you're just going to have to deal with it." and people like my mom and my closest friends don't get it either. nobody understands how beyond frustrating it is. i'll get into the worst moods and not have a reason for it, but i'll stay angry for hours or burst into tears over someone looking at me the wrong way. it'll get to the point where i have to isolate myself from other people because the abrubt mood changes get so bad. as bad as i hate to admit it, the pain from the arthritis is gone now and supposedly my muscles are doing better too. developing arthritis caused me to have to quit cheerleading, something i've loved doing for 6 years, because the pain got to the point where i couldn't get my arms above my head or bend my knees. however, i'd almost rather deal with the horrible joint pain than deal with the side effects of prednisone. if your doctor gives you and alternative method, take it. i've always been confident in the way i look and really outgoing and happy and now i sometimes catch myself thinking about suicide. that's shocking to me because i've got so much going for me, but this medicine makes me miserable. and when i complain about it, anyone i'm talking to just looks at me like i'm being a cry baby. my mom does too, she'll say things like "you just have to do this. i know it's not what you want but to be honest i'm sick of hearing you bitch about it."
i feel a little better knowing other people feel the same way - like nobody gets whats going on with them. the prednisone does give me days of really great euphoria and days when i feel like i could run a marathon, but waking up in the morning to the acne and huge face puts me to tears every day. i have to pee all the time, usually getting up at 2 or 3 am. i don't sleep well anymore and i do sweat all the time. which also sucks being a teenage girl. i'm always hungry, and when i eat i never feel full so i don't know when to stop. my neck and face have put on so much weight that when people see me in the halls or out and about they ask me what happened. mind you these are people i don't talk to, just ones i know from classes or whatever. and it's pretty bad when teenage boys i've never really talked to ask what happened to your face. kind of a blow to the ego, or whatever is left of it at this point.
i'd like to know if, as my dosage gets lowered, the side effects will diminish and when i'm off the prednisone completely if they will disappear altogether. any help there?
or if there is any way to help the acne or puffy face

my doctor just put me on something called methotrexate or something like that to help wean me off the prednisone, and does anyone know what those side effects will do? or if they'll affect the prednisone side effects?
i'm constantly obsessing over gaining weight and what my skin looks like and what i eat and how heavy my face feels and the occasional pressure in my eyes to the point where i just want to be put out of my misery.
and after reading other people's stories i really don't understand why this drug is still given out as freely as it is. but maybe all doctors are like mine, they just don't get it.
best of luck to anyone who's on prednisone, my heart goes out to you; i'm right there with you
sorry this became like a book it wasn't meant to be this long

They think that I have either crohns or ulcerative colitis. I have tried antibiotics, lialda, mesalamine enemas, with no improvement. After another colonoscopy they put me on prednisone at 40mgs, 30, 20, 10, then 5 decreasing weekly. Well the first week was okay. I had some of the side affects, insomnia, extreme hunger, and crazy. I could deal with that. But then when I decreased down to 30mg, my body flipped. I awoke from the middle of the night with burning pain in the knees. So bad I took 4 ibuprofen and threw myself in the tub with epsom salt. I thought okay that was weird because I have never had a joint pain in my life. I saw the gastroenterologist that day bc I was still having abdominal pain. He totally blew off the knee pain and said he had no idea what that was. I thought okay maybe it will go away. A few days went by and nothing. 3 days later and I awoke one morning crying in pain because of my legs. I called the on call doctor who also said he had no idea and go to the er. So I went crying hysterically for 4 hours. Even after 3 rounds of dilaudid I was still in pain. They suggested a Rheumatologist. So I went to one a week later who said I was going through steroid withdrawals. And there is nothing we can do but treat the symptoms of pain. I am now down to 10mgs have been out of work for 2 weeks and am absolutely miserable with severe leg pain, muscle weakness and fatigue. He also adjusted the drop down increments to 5 instead of 10. Anyway I will never take this drug again and I think they rushed to this one. Just wanted to share. I am glad I found this website because I went from a fully functioning physically fit 28 year old to a crippled crying crazy person. I think I was scaring my husband, honestly, until we both read some of your postings which were similar.

I was on Humira about 16 months ago and had no side effects at all. I was taken off the drug when I had a resection done last summer (Crohns). My symptoms came back this past January and they put me back on the Humira pen. I got really bad local site reactions: bad bruising, lumps, and eventually scabbing. I went through 3 rounds of the drug this time before the doctors took me off of it. I had my first Remicade infusion one month ago and am keeping my fingers crossed that I would have any side effects.

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

I was diagnosed with Ulcerative Colitis when I was 20. (i'm now 26) I was on 80mg of prednisone for about 2 years. I again about 45 lbs, between water retention and just an increase of appetite and extra calories. I developed moon face and all the other horrible side effects. I was sweaty, bitchy and fat. Needless to say I was miserable. My doc put me on Remicade as an experimental drug, and it seemed to work well. We were able to wean myself off the prednisone and within 6 months the weight came off with the help of some Weight Watchers. 6 years later I'm back on the prednisone, but only 40mg this time, and hopefully for only a couple weeks. It's only been a week and I have insomnia, night sweats, mood swings (my poor boyfriend) rapid heart rate, and weird dizzy/nausea spells in the afternoon. My face seems a little bit fuller, but I think I'm being overly critical since several people have told me I look like I've lost weight in the last week. (it could be due to my flare up making me lose weight) My suggestion is that although this drug is horrible and makes you think you are losing your mind, it does help. Try and breath through the mood swings and remember it's not you. Ask your doctor for a tranquilizer if you have too. (The first time I was on prednisone, my dr. prescribed Xanax because I was so bad. It helped a lot) As for the weight gain, it's hard, and I'm trying to snack on carrot sticks and fruits instead of a whole bag of cookies. One good side effect I have noticed is that my complexion if the clearest it's every been. It's really incredible to be honest. Please know you aren't alone, and although you might not look like how you used to, your loved ones (hopefully) understand that this is a side effect and see you for how you've always been. It sounds sappy but sometimes we need to be reminded of that. I know I do. Good luck to you.

After being treated for two major crohn's flares since 2005, I have had all the regular treatments for crohn's. Remicade gave me a liver abscess so the only choice left for Mass General Dr. I see from the MGH Crohn's and Colitis Center was Humira. It is helping to keep me in remission after a long bout early spring, but since Humira Pens were added to my treatments and medications I have had short term memory loss, lack of concentration and foggy head. I have been off and on Prednisone without the memory loss, but have had a bit of a fog due to it. This has been bad enough that after attempting over a month to get back to my teaching job, I have had to ask for a leave. Has anyone else complained about this problem with Humira?

after my first remicade treatment i developed a slight but constant headache,flushing

My name is Alex, this is a 7 years since I have been on Remicade, The Remicade works well for me .
The only side effect from remicade I feel like I am not myself and I don't feel like do anything, and I don't perform good at my work, I don't like to think to deep or details work. My job is computer.
I get tired of things so easy.
Overall I am not happy person when I do my remicate.
Dose Anybody has these problem I mentioned????

My daughter is 12 and just started taking Prednisone 5 days ago (40mg - she weighs 105lbs) .. I've been watching her salt intake - tonight she looks a little pale to me - is that a side effect? has anyone else experienced that? She has Ulcerative colitis (2 years this month) - started w/asacol, colazol, 6mp (gave her pancreatits) now is on methotrexate since Nov '07 - was put on prednisone because of a recent flare - to me none of these medications have put her into remisson - always goes 3-5 times a day - sometimes blood - sometimes not - don't know if prednisone will help - so afraid of the side effects -
Dr. said if it doesn't - Remicade will be the next option - after that surgery - only thing - my daughter has never complained of pain - except when she was on 6mp -
sorry for babbling - just so scared...

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?

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.

REMICADE IS DEADLY and the Cenjtcor downplays the severe side effects that normal blood work will not pick up. The drug causes and increased risk of lymphoma. WHY AREN'T THEY URGING PATIENTS TO GET A BASELINE BONE MARROW BIOPSY!!!! MARK MY WORDS...PEOPLE ARE GOING TO BE DROPPING LIKE FLYS WITH CANCERS FROM THIS TOXIC DRUG!!!!!

The arthritis/crohn’s disease drug Remicade, manufactured by Centocor is a deadly drug and should be taken off the market. The drug has caused death and permanent damage to patients across the world. The drug company makes billions of dollars and downplays the side effects including the increased risk of lymphoma and blood problems. The company downplays infusion-related reactions saying that those reactions usually occur within 1-2 hours post infusion. Here’s the truth:

*Centocor has been reprimanded by the FDA for publishing false claims in its marketing literature given to physicians. See FDA website for official document.

*The literature lists syncope (drop in blood pressure), bradycardia (slowed heartrate), pancytopenia (dangerous drop in blood cells..platelets, whit blood cells, red blood cells etc, increased risk of lymphoma, serum sickness. The literature says to call MD if you are “pale”.

*Here is a case of what happened to a woman in her 30’s with rheumatoid arthritis after only the 2nd infusion. She was not on methotrexate at all so this is all Remicade’s fault. Approximately 2-3 days after the 2nd infusion the patient began to feel tired and sore but still worked an 8 hour shift that day. By 12 midnight the patient’s entire body flared up…every joint was literally swollen and she was vomiting violently.. She could barely get to a phone to call for help. Her blood pressure dropped to 50/40 and all of her blood counts plummeted. Her Sedimentation Rate (which measures inflammation had always been below 2 and it spiked to 29!!!) Remicade caused the opposite of what it was supposed to do. It also increased greatly her C-Reactive Protein which is also a measurement of inflammation and can cause cardiac inflammatory processes as well increasing the risk of cardiac damage. The nurse in the triage area told the patient that if she had not called for help SHE WOULD HAVE DIED !!! She ended up in the hospital for 5 days in an isolation room. She was in excruciating pain and had to be given Oxycontin every 12 hours and Dilaudid IV every 2 hours to control the pain. For the first 2-3 days she could not even walk or go to the bathroom without assistance. She was given high doses of prednisone to decrease the inflammatory process and get her pain under control. A hematologist performed a bone marrow biopsy which revealed an abnormal population of plasma cells that can develop into myeloma or lymphoma. The hematologist said that the patient would have to be monitored lifelong to watch the pre-cancerous cells. The patient was out of work for 3 months and was forced to change jobs because of her fatigue level and short term memory problems. She also suffered post-traumatic stress due to her near-death experience and total upheaval in her life. She is a healthcare professional. Even 4 years after the reaction her blood counts are still abnormal and she has still had short term memory problems and vision problems.

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.

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...

Been on Prednisone for 3 years now for ulcerative colitis. At first tolerated the drug quite well. But after a few months started to gain weight, acne. After 3 years of yo-yoing between large and low doses, each increase in dose made me feel worse. I am now at a state of osteopenia and of extreme tiredness and brain fog. I see 80yo with more energy than I. I cant walk up 10 sets of stairs without feeling tired out. I need to sleep 3-5 hours a day just in order to function. As mentioned before brain fog is amazingly bad. I'm a scientific researcher which can no longer work.

Prednisone has introduced to me what panic attacks are, mood swings, joint pain and swelling, extreme muscle fatigue and wasting, blurry vision, in habitual eating habits, depression.

This drug has ruined my life. I would have preferred having surgery to remove the colon and going to the toilet 10 times a day rather than not living as brain fog and tiredness that makes my life a dream-state nightmare.

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 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.

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 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 started with 60 mg per day for polymyalgia rheumatica and now after two years have weaned myself down to 5 mg per day. I have a side effect that I have not read anyone else having. It has effected my taste buds. Many foods that I loved in the past, have a foreign taste to me. I am 66, male and have tried to drop down to 2 1/2 mg but the pain is too intense to remain at that level, so had to return to 5 mg. I have lots of pain in the feet and especially toes. I can tell that I am getting better and am very anxious to get off of Prednisone.

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 ulcerative colitis and have been on and off Prednisone for 3 years. Usually about 40 milligrams and tapering. I always noticed sensitive teeth and leaky leg veins/ swelling and discolored. That was all really. Then in April this year, during a bad flare, was put on 120 milligrams (accident by Dr or Pharmacist) for two weeks then 80 mg for several weeks then 60 until I could get on Remicade and finally get off the stuff in August. I gained 30 lbs while on a strict no sugar, specific carb diet, from size 12-18, moon face, triple chin, hump on back, big stretchmarks under my arms, fallen uterus and bladder now needing surgery, lost my voice, glaucoma and cataracts, cholesterol went from 189 to 318, leg and hand cramps daily and nightly, now am experiencing intense joint pain in every joint of my body. My legs and ankles swelled up terribly and now I have to wear support hose constantly. Since getting off Prenisone in mid August til now mid October, my face and neck have been returning to normal, friends mentioned last night my face looked more normal (I was hating seeing myself in the mirror or a picture). My teeth are terribly sensitive, even room temperature wine (acid?), hot or cold.