Drug Ratings for REMICADE

Average Rating: 3.7 (402 Ratings)

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Key to Ratings: 1=LOW (I would not recommend taking this medicine.)
5=HIGH (this medicine cured me or helped me a great deal.)   

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    Charts & graphs: Reviews Summary for REMICADE  | Top 10 Adverse Effects (reported to FDA)

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 2  crohn's severe allergic reaction, fast heart rate, high blood pressure, difficulty breathing, teary eyes, red face. All effects are not usually that common. My first dose had zero effect, then after 20-30 into my second dose I had a severe allergic reaction. Doctor happened to be present and stopped infusion. Then gave benadryl and steroids, then fluids and started infusion again. Allergic reaction happended again!!! Stopped infusion for good. My doctor said this was so rare and he couldn't believe it happened so quickly. F 30 4 weeks

 5  Psoriasis NONE!! Having this medication has been a life changing experience. I have had many infusions (over 20)and was clear of all psoriasis until recently and even now I only have one or two small patches.Pre Remicade most of my body was covered in psoriasis. F 31

 5  Crohns My memory is bad. I am often foggy/dizzy. I feel tired all the time. I have joint pain I was PREGNANT while on Remicade & my baby is fine. No problems during pregnancy other than my poor health. I had a c-section & had no problems healing. I donít feel that I get sick more often than any other person. I was near death when Remicade was started as a last resort to save my life. 2 weeks in the hospital Remicade & prednisone saved my life. I did not read the BLACK BOX warning before trying the drug but that is because I did not have anything to loose at that point. I will keep using Remicade as long as it works despite its horror label/warning. F 31 6 years
1X O
 4  Crohns disease absolutely no side effects that i'm aware of. this has been great. i've had relapses of the crohn's symptoms every once in a while, but that's when my dose was too low or when i was getting close to needing a top up... otherwise, this treatment has been so helpful, definitely has improved my quality of life and i am only taking remicade. i have pretty severe stricturing crohn's but this has been managing the symptoms quite well. i'm very pleased. F 31 20 months
1X O
 4  Crohn's Disease Tiredness? (on Other meds too which may cause this) Gut ache for around a week after infusion. This is the only drug that has had reasonable control over my Crohns disease...I have had Crohns for 11 years and had 5 major ops in the last five years, two of which were emergencies and one op saved my life. I don't believe my Crohn's is in remission, but this drug has managed to keep me out of Hospital & I have been able to go out to places I would not have felt well enough to go before. F 31 16 months

 4  Ulcerative colitus Aching muscles in my legs and arms, only started after 8 months of treatment. Normally lasts a few days. During one infusion I became very hot and nearly passed out, nurses said it was because od dehydration, so I had a saline drip, and then carried on as normal. It really helps the symptons of my colitus. It has virtually stopped the bleeding. Steriods had little effect on the symptons F 31 9 times

 4  chrohns Horrible headaches, brain fog, cannot form words correctly, bloating, extremely tired for a few days after, dehydrated, shaky, irritable M 31 2 months
5mg per kg
 1  Ulcerative colitis Extremely dry skin, lost sense of smell for abt 2 months, every single hair follicle on my head burned and hurt and then I started balding. Arthritis in my hands and knees, tendonitis in my achilles tendons, dry inflamed eyes. Remicade did nothing for my UC, but it ruined the rest of my body. I haven't taken it in 3 months and never will again, but the side effects still remain. I hope to God they will go away. I had only 3 loading doses, and on the 3rd one I had a horrible reaction where I couldn't breath and started sweating profusely-- instead of stopping the infusion, they just shot me up with a bunch of stuff to stop my reaction and continued till the bag was empty. I used to have oily hair and skin, now I'm dry and brittle... I could go a year without washing my hair that's how dry it is. I have so much pain from the arthritis it gave me, and I can barely open my eyes at night because they are glued to my eyeballs from being so dry at night. It hurts to walk because of the pain in my achilles tendons. All of my hair is falling out. I used to have thick thick long hair, now I only have 1/3 of it left and it's still falling out I won't be surprised if I go bald. So much has fallen out that I have a strange receding hairline. This is the worst drug you could ever take for UC. I never knew that there were mice antibodies or proteins in there, which is what causes these horrible reactions. If you are desperate, try Humira instead as it is made with HUMAN antibodies, not mice, and the bad reactions are much less in comparison. F 31 5 months
1X O
 1  Colitis Severe reaction, still nausea 8 wks on, still no appetite. Heart palpitations, low BP, low blood sugar. Ached from head to toe for 4 days unable to get out of bed due to this. Spent 8 days in hospital was admitted after having reaction during infusion, was almost out of it & did nothing but sleep felt so drugged up. Scary experience I'm now 8 wks since last infusion things are better but I still don't feel right still NO appetite & lost a total of 2 stone 10lbs in 8 weeks. Look very pale & drawn. Constant nausea still . Was doing so well on it. Consultant confirmed it's a severe reaction, a frightening one for me as I felt I wasn't in control of my body & scary for my parents to now see me a shadow of my former self. *not everyone gets a reaction F 31 1 years

 1  Crohns Disease Severe Joint pain- headaches-swelling of feet and hands-rashes. Serum Sickness- Lupus, and Steven Johnson Syndrom. Numbness and tingling in arms, hands, and legs. Couldn't move head, arms, legs, and hips. Exray taken- they said it looked like I was in a car accident- dislocated jaw, 4 protruding disc in neck. Tumor on left shoulder, I stuttered for 2 months. I still have protruding disc, lupus, numbness and tingling- it's been 4 years since I took remicade. If you feel pain- stop the medication.. Doctors will tell you it's normal or that it will go away with predisone- it won't. It gets worse you won't be able to walk or sit up. Knees will feel like your getting hit with a baseball bat everytime you go to sit or stand. HORRIBLE!! I went 9 months not being able to move without help or pain. They don't know anything about this med.. My blood test were off the charts.. And they hide it- my medical records through doctors office were wiped clean of my complaints.. But luckly I had gone to the ER on several occasion and it was documented through them.. It took me 4 months to get medical records from my Rheumy, and a threatening phone call from another Rheumy. Be Careful, and keep records. F 31 2 months
1X M
 5  Crohn's Tired, confusion, forgetful saved my life & let me have a healthy baby F 32 6 years
1X O
 5  UC No side effects so far. Keeps me in remission. My last colonoscopy, my Dr said my colon is healing. Even if this stuff causes cancer 20 years from now, it was worth it to have my life back! M 32 2 years

 5  Behcet's Disease I haven't hard any major side effects with the Remicade. I am tried the day off and several days after my infusion. I have also found that I get a heavy chest and develop a cold afterwards. This tends to happen more often in the winter months than summer months, but it can happen at anytime. I have had very good success with Remicade. I have been getting infusions since June of 2008. When I initially started I had GI problems and my GI tract was 60% ulcerated from my mouth to my anus and I had lost 30 lbs in a few weeks. Right now I am getting 800mg every six weeks, but about two weeks prior to the infusion I start to feel my symptoms coming back and am extremely fatigued. I am actually going in to talk to the doctor this week about possibly adjusting the length of time between infusions or the dosage or maybe both. I guess we will have to see. F 32 2.5 years
800 mg 1X M
 5  Rectal Abcess related to Crohns I was first introduced to Remicade in 2003 after surgery for a Rectal Abcess. (would not wish on my own worst enemy)The Abcess was Crohns related. I was diagnosed with Crohns when I was 8 years old. I am 32 now. The Remicade pretty much kept the Abcess under control. In 2006 and 2007 I was no longer taking the Remicade and once again developed the Abcess. I needed surgery once again to correct the situations. Since the last Abcess surgery in 2007 I have consitantly taken an infusion of Remicade every 6-8 weeks. The results have been great! Additionally since 2007 I have been taking 6mp and prilosec every day. But than again this is nothing in comparison to what I have gone thru from Chrohns. Like I said I was diagnosed at 8. Been on every drug in the book during the time of 8 to 19. Always led a normal life untill 19. That is when Chrohns nearly killed me. Was in and out of the hospital thru out the year of 1997. Had every side effect and syptom in the book, hair loss, body odor, back When I first started the Remicade I was given Benadryl which is used to counter any side effects you may develope during infusion. I have to admit the Benadryl really kicked my a**. It makes you very sleepy and gives off a horrible burning and stinging sensation in the arm. After time I asked to not have the Benadryl. No problems without it thankfully. The only side effects I feel after infusion is a headache and that I am very tired. This occurs hours and the next day. These effects usually clear up in a few days. M 32 3 years
1X O
 5  Ulcerative Colitis Only side effects I get are headache and fatigue / weakness after infusion for about 24 hours. It's worth it considering the pain in intestine goes away and I go bathroom 1-2 times a day compared to 6-8 before treatments. M 32 4 years

 5  Crohn's Only once during my second treatment, but I heard that it was a normal thing. I love this drug. Itís like a miracle. I am no longer taking other meds (this of course is against my doctors orders). My GI wants me to continue on Immuran, but the Remicade helps me just fine. Though I think I need to ask him to give it to me more often. I go into the hospital every 8 weeks but I notice I start experiencing the pain and frequent bathroom visits at about the 6 or 7 week mark. I've been on it for about 3 or 4 years and I swear by it. Though the drug is expensive, I will continue to use it. Since getting my infusions I've been hospitalized only once. Before Remicade, I was in there 2 times per year. Its a blessing. :-) F 32 3 years
 5  Crohn's One 5 yrs ago itchy burning feet. I am 32 and have been on Remicade for 7 yrs. Before normal meds with no luck. I say taking my Remicade is like winning the lottery! I could not live without it. The only downfall is it is expensive but worth it. F 32 7 years
 5   I am having soreness in neck and back muscles but it may not be related to the medication also insomnia F 32 3 days

 5  uc Fatigue during and after infusion. Painful joints several weeks after.Dry skin. Sensitive to cold. Prone to mild infections (solved with oral antibiotics) F 32 8 months
5mg perkg
 4  ulcerative colitis I get pretty dizzy especially during the last hour of treatment when the Remicade is going in faster. After the infusion, I get really tired and my arm hurts around the infusion site. I am fine the next day. I didn't notice anything after the 1st treatment, but after the 2nd one two weeks later, I was much better. I had the best weeks I've had in over 2 years. The 3rd treatment also seemed to help, but symptoms came back before 8 weeks for the next treatment F 32 4 months

 4  Crohn's Can't really notice any major negative side effects other than my body is more sensitive to what I do for 3-5 days after an infusion. So I have to be more aware of what I eat. I cannot rule out that this is a psychological effect though. I went from having 9/10 bad days to 9/10 good days. Infusion every 8 weeks + 1mg of Imuran per lb of body weight taken daily. Clearly the drug reduced inflammatory response in my case. My advice: become an expert on your disease and keep up with the latest treatments. Many Dr's have good intentions to help you but frankly play a guessing game with medications. The only one who really can put the right amount of care into your condition is you. Remicade + Imuran is the currently the most effective method to combat Crohn's. Taking one or the other is clinically proven to not be as effective as the combination. Supplement your immune system with 40,000 IU of Vit D / week to help fight off being sick. It makes a big difference for me. Watch your diet, stay off prednisone. M 32 2 years
5mg 7X O
 3  UC Having severe pain in the knee's, ankles and wrists. Dry scratchy throat with metallic taste as well. Only having taken Remicade once I am going to give it a chance but if this pain persists it would just be to much. Dr. has put me on 60 mg. Prednisone a day to combat the pain but it does little to subdue the pain. on a possitive note only after one treatment of Remicade my UC has turned around. M 32 1 weeks
 5  crohns I had shingles briefly once F 33

 5  UC My biggest issue has been with chronic infections. Late June, I had an unidentified infection that led to a 5 day hospital stay. They suspected meningitis (SP) but nothing was conclusive. Since then, I have had two bouts of strep throat requiring antibiotics. In less than 2 months I have had a total of 3 courses of antibiotics and am beginning to be concerned about resistance. This morning, I am on my way back to the doctor, as it appears that I have strep once again. Initially, my response was slow. But at this point, I can SURELY see the impact. For the first 3-4 weeks following an infusion, I am like a normal person again. I can so identify with those of you who have shared the same sentiment. I am currently on a 6-7 week cycle, which may not be the best thing, but at week 5 I am breaking though terribly and can't seem to stretch it out. My doctor is lovely and indulges me, I just hope it is not to my detriment. All in all, I have loved this medication. Even though it weakens my immune system, I feel good about the change it has brought in my life. I am also grateful to have health insurance because at 4-6K a pop, that could be painful too. (smile) Good luck! F 33 10 months
 5  Chron's None really, other than sometimes my teeth and gums get really sensative like the two weeks before my next infusion. Usually the two weeks before my next infusion, my symptoms start coming back, not as bad, but I have to start using that wonderful place called the bathroom like 3-4 times day. They are going to either change the frequency or the dose. But is really has been the miricale drug for me. F 33 7 months
 5  Crohn's Ileitis No negative side effects what-so-ever I began taking Remicade for a fistula that developed in my small bowel and because no other meds had ever worked. I obtained remission with the first three infusions. I was in remission for 15 months leading into my second pregnancy. I was on Remicade throughout the pregnancy with no adverse effects. Baby 2 is very healthy! About 4 months post pregnancy I flared and have been having problems adjusting the timing and dosage to obtain remission. After each infusion I feel instant relief of all my Crohn's symptoms and I can eat again!!! F 33 3 years
5mg per kg 1X O

 5  ulcerative colitis So far so good ... I take a day or two to regroup b\efore working again. F 33 2 years
200mg 1X O

 5  Crohn's Disease None that I'm aware of, other than sleepiness the day of the infusion from the Benadryl. This drug has given me my life back! I take it every 6 weeks and feel like I don't even have Crohn's. I may be developing a resistance to the drug though, as I used to only need infusions every 8 weeks but now have symptoms at 6 weeks. Hopefully the drug will continue to work for me until other options are available. F 33 5 years

 4  Crohns Maybe I'm one of the lucky ones, but I have had no issues with remicade and the side effects. I've been doing great on it. I get mine every 8 weeks and it seems to be working keeping things under control. I feel great - normal! I can eat again! I was put on remicade after my crohns had got so bad I had 2 strincture's , a fistula and an abscess. I'm hoping it will continue to work for me. F 33 1 years

 4  Crohns and RA I get a horrible headache, followed by a sinus infection after every treatment. Nothing makes the headache go away. After three days turns into infection and I am forced to go on high dose of steroids and anitbiodics. has worked to keep my crohns in check but my RA problems sneak out about two weeks before I am due for another infusion. Am also on metotrexate injections and steroids. 33 years old. Noticed lately my hair is starting to fall out. F 33 800 days
900MG 1X O
 4  UC None, so far. Just got my first dose of Remicade 2 days ago. 2 hours and relaxing. I've been tapering prednisone for the last month and am currenlt on 15 mg. I feel good, fewer trips to the bathroom (3-5) in the last 2 days as opposed to 4-8. Seems to work. Thank the Lord for benefits through Manualife.(Canadian over the counter cost would have been $4,000 or $3500 USD) M 33 2 days
 4  UC My blood pressure drops during the infusion, but bounces right back up when it is over. I have developed mild rashes on my face and stomach during the treatment, but they too disappear as soon as the treatment is over. Two weeks after infusion, I often develop a UTI, which my GI says is due to a weakened immune system, but I can deal with it. Overall achiness sometimes hits about the same time, with or without fever. Though the side effects are sometimes unpleasant, I will take them over the pain of dealing with a UC flare. About a week before I am scheduled for a dose, I start to feel a flare coming on, so I am always grateful when infusion day rolls around. I have heard that allergic reactions can increase/become more severe with several doses, so that does worry me as I have had mild reactions in the past and I am always worried that it will be worse the next time around. I do take Benadryl and Tylenol before the infusion starts in order to minimize the risk. F 33 6 months

 3  UC None that I can pin on Remicade Additional Meds: Asacol / Azasan Benefits: Seems to be less blood in stool Continuing symptoms: 10+ trips to the bathroom/day, loose stools/diahrea, feeling of urgency, I have lost 30 pounds (~140) over the last year. My schedule: Dose 1 Dose 2 - 2 weeks after dose 1 Dose 3 - 4 weeks after dose 2 Dose 4 - 6-8 weeks after dose 3 Dose 5 - 6-8 weeks M 33 6 weeks
 3  RA I am writing this for my husband. We are not sure if he is having any side effects or not. We are looking for some answers. He has taken 2 dosages so far. He has seemed to have flair up since starting, but also now has leg fatigue with weakness and pain. He has been exhausted to the point of being able to sleep all day or falling asleep unexpectedly while up. He has also been having headaches. He has started jerking and twitching in his sleep. He has also been on Methotrexate 2.5 mg for 2 months. He had no side effects except mouth sores before the Remicade, but we also know that they both can take some time to show results or issues. M 33 1 months
1X O
 5  UC/Crohn's None that I can pinpoint. Has completely worked for me. Have had a flare-up of UC/Crohn's (they still can't determine which it is) for 2 years. I think I have tried every medication. Finally had to go into the hospital to get Remicade because I was too sick to get it on an out-patient basis. It took 3 days to start feeling the effects. I feel great now! Why didn't I try this sooner? Have had 2 infusions so far. F 34 5 weeks
 5  Crohn's Disease I have not noticed any side effects. I was having severe diarrhea and after my second dose of Remicade it stopped that day. But, I was also on low dose of Prednisone and had started Imuran. F 34 7 days
 5  UC After the first infusion, I had the night sweats and felt very tired the following day. After the second infusion, this did not occur. I will be getting my third infusion in a few weeks. I am 34 yrs old and was diagnosed at age 13. I have pancolitis that is difficult to treat. When I flare, I only respond to prednisone but have difficulty tapering. Was on imuran for 2.5 yrs but it unfortunately stopped working and I went on Remicade. So far, it has given me my life back after battling a flare for 9 months. I am extremely happy so far. I hope I continue to respond for many many years ahead. F 34 1 months

 5  Crohns Itching, usually just in the evenings. Have changed from 8/7 week schedule to a consistent 6 week schedule. No itching issues prior to this summer. Also dealing with protein deficiency and swollen ankles by end of day. Very pleased; bowel-resection 5+ years ago and no major flare ups since. Drowsiness from Benadryl; although I welcome the additional rest. Usually take rest of day off and take it easy the next day. M 34 5 years
 5  Behcet's Not really sure if I have any but it perhaps is the cause of sharp pains that I get in my hip (especially apparent at the end of each 8 week Remicade cycle). Also I have recently developed an annoying persistent itch at the bottom of my thumb.... I have been taking Remicade for a year and a half and it has, without doubt, kept my Behcet's symptoms from flaring up - my eyes have been completely inflamation free and mouth has had no ulcers. In short, Remicade has been a Godsend for me. M 34 18 months

 4  Psoriatic Arthritis / AS A couple of side effect while having the meds. This medication has changed my life. I went from bed ridden with psorisis all over me and couldn't move to even go to the toilet. To walking 5kms a day. Skin perfect. It comes back sometimes on my back. Everyone knows that life can change you. F 34 5 years

 4  Crohns Really tired 2-3 days after infusion. Aching joints and muscles for about the same length of time. Gave me my health and my life back. Mostly back to normal after being told I would lose my entire colon if Remicade didn't work. I now have an infusion every three months and hoping to extend that even longer. F 34 1 years

 3  RA Headache started during infusion and worsened after it to being one of the worst headaches of my life, nausea, butterfly rash on face,general itchy rash over arms and torso, cough 3 days after infusion that turned into bronchitis and still hasnt left (even after steroids) This was my first infusion, not sold on continuing it yet. The headache grew in severity so much so that I was sure a knife was sticking out of my head. Three days later a 'butterfly' rash appeared on my face and I started with a dry hacking cough. The rash led my doc to think the possibility of Drug Induced SLE, still awaiting blood results. The cough has grown to bronchitis, had it for 2+ weeks now. Bad enough that my doc cancelled the 2nd infusion and put me on steroids. The Remicade has done nothing for my RA yet, but I know it is too early in the treatment to expect it. I am just not sure I should continue, the side effects coupled with the joint pain are miserable. I feel like a walking science experiment, just trying to figure out the right combo of drugs and tolerable side effects to get me up and working let alone caring for my toddlers again. F 34 2 weeks

 3  Crohns I have previously had Infliximab for 12months till I got slight nuero tingling and the money ran out so we stopped the treatment. well for 18 months miracle drug... But now I have more funding and have had one treatment and had, double vision, weakness, tingling/numbness in arms and legs, metalic taste in mouth and swelling of tongue...... This is the miracle drug I was hoping for UNTIL now! The drug company have never heard of the tongue thing but it started 4 days after infusion and we cant see what elsecould have caused it... I am thinking of trying humira now... bit scared F 34 1 days

 3  UC This is my first infusion and I am really tired and I feel like I can have the flu but with no symptoms. I was really sick last night vomiting and going to the bathroom all night/day (what else is new). I am pregnant and it worries me to take another medicine (on Asacol and Predazone) even though they are all considered "safe". I am waiting for the benefits of the drug to kick in. F 34 3 days

 2  rheumatoid arthritis have had 2 iv infusions so 1st infusion was 2 weeks ago. almost instantly i felt back pain as i sat in that chair..felt very sleepy, nurse said it was due to the benadryl. after a few minutes i could feel the pain spreading through out my whole body.. my back pain never went away and i actually felt worse than before my infusion. i called my doctor a few days before my 2nd infusion and told her about the side effects and back pain and she said i had to keep going. so thursday i had my second infusion and the same thing happened, as she injected the remicade into the line i felt the sharp pain in my is now sunday and i have had a severe headache since thursday, back pain worse and every joint in my body aches bad...had to go to the store and had to get in one of those electric carts cause i cant walk without pain..maybe its just a flair up but, i was feeling MUCH better before the infusion of said it was 1then another one after 2 weeks F 34 1 months
1X O
 1  Rheumatoid Arthritis Tired for days after, tightness in the chest, itchy, and weak I went to the doctor, after going to work one day and by the end of 12 hour shift not being able to walk upright without pain. My regular doctor thought maybe I had Fibro Myalia, because of the problems I was having. So he sent me to a rheumatoid doctor. After blood test that doctor told me I had RA and put me on steriods and methotrexate. When that combo didnt help, he put me on Embrel shots. One a week as prescribed. . they didnt seem to be helping but the doctor says it would take time. My insurance only covers 6 grand a year with the shots and insurance i was footing the full bill in 5 months and still not feeling better. So doctor got me on Remicade infusions as an out patient. So was covered by medical insurance. Frst infusion was groggy and tightness in chest. Blood pressure dropped so severely that the nurses were concerned that something was wrong. Started out one infusion every 8 weeks. . not helpign so then was every 6 weeks. . still no help. Blood work doctor said looked promising. I was then going once every month. Still groggy and sleeping through it. Sleepy for days after. Still in pain and getting depressed. Doctor had my infusion dose raised as high as he dare go with it. I was not feeling better, but he was telling me to give it time. Was almost 2 and half years of infusions. He then informed me he was moving and sent me to a new rheumatoid doctor. Who did not recieve all my records from first doctor so he sent me to do new tests. The new doctor informed me F 34 2.5 years
 5  Rheumatoid Arthritis Somewhat tired for about a day after infusion. Not a big deal. Although I was initially quite hesitent about being on a biologic my moderate\severe RA symptoms were better within a week of my first infusion. Nodules dissapeared, my energy increased, and the pain was significantly lessened. It has maintained it's efficacy over the three or so years I've been on it. I am very positive about this drug as I feel it's enabling me to live a normal life. F 35 3 years

 5  Crohns Usually only Dry Mouth and fatigue, only in my legs Before Remicade, I couldn't move. Just about bed ridden. Muscles and joints would cease up. I would eat a grain of rice and be in the bathroom for hours on end. After my first loading dose, EVERY ache, pain and bowel movement subsided immediately. It has 100% improved my quality of life. Side effects or not, it's worth it just so I can get on the floor and play with my kids. M 35 6 years
600MG 1X M
 5  Crohn's Disease a slight headache and joint aches 1-3 days after a treatment. Then it goes away. I love Remicade! I has changed my life. Last year I had lost 80 lbs and ended up in the hospital with a ruptured colon because my other drugs weren't working well enough. They started me on Remicade and now that is the only drug I am on. I works wonders. F 35 1 years
 4  Crohns None I have been taking Remicade for over 1 year. It seems to really help. Especially the first 4 weeks after treatment. I take it every 8 weeks.I put on weight feel much stronger and more energetic. Wierd thing is weeks 5 to 8(next treatment) I seem to lose all the benefits and go back to square 1. M 35 14 months
 4  Ulcerative Colitis I am experiencing horrible insomnia and weight gain. I occasionally itch but this isn't as bad as the insomnia or weight gain. I have even had the gastric sleeve so I know it is not an issue of overeating, it is the remicade. Although it has helped me tremendously I am seriously considering alternate medications becasue of the weight gain. F 35 2 years
1X O

 4  Psoriasis I've been on Remicade for about 18mo. I had a reaction to the last two infusions given 4wks apart. A nurse comes to my home to administer the infusion so I'm not at any kind of hospital where a doctor is present so these episodes were very scary. In both cases, approximately 2-3min after starting the infusion I had a tightening in my chest and throat. A tickling sensation in my throat caused me to caugh but I couldn't catch my breath. The nurse said my face became extremely red, I felt very hot from the chest up and sort of lathargic. I take two Tylenols and a Zyrtec a half hour before the infusion begins. Even with this the nurse had to stop the infusion and pump me full of benedryl. After the benedryl was administered we continued with the infusion with no further incidents. Just extreme fatigue when finished. The whole situation seems strange to me because I've been taking this medicine for over a year and am just now starting to have a bad reaction - allergic reaction I'm pretty s I've been on Remicade for about 18mo. 85% of my body is covered in psoriasis. I've used Embrel, Humira, and now Remicade. With each medication I would clear up within a day or two of the treatment but after a while the drug stops working, like my body is building up an immunity to the drug. I started out getting infused with Remicade every 8wks with 400mg. Now I get infused every 4wks with 700mg, with no noticable change in psoriasis. Since I started on Remicade I now have extremely painful arthritis, recently diagnosed as psoriatic arthritis. My doctor is now having me take 10mg of methatrexate to keep my body from building up immunity to the treatment. Hopefully, I will see results this time. My last infusion was this morning and I begin taking the methatrexate tomorrow, 10mg once per week. I really hope this works, we'll see. I will report back. M 35 18 months
 4  Ulcerative Colitis Fever, nausea, no appetite, headaches, fever, joint pain (body aches) Had my second infusion yesterday. Experienced no symptoms with first loading dose but the second dose has me out of commission completely(no work, sick all day). Medicine has helped immensely with colitis symptoms. F 35 4 months
750 1X O

 3  psoriatic arthritis Severe Joint swelingand stiffness at about 5 to 6 weeks when it is time for my next infusion.This began about 9 months after beginning treatment. When it works it works great I feel wonderful. I can feel when it wears of at about the fifth or sixth week . F 35 9 days
 2  Crohn's Disease Had my first infusion on a Friday, the next Wed, I developed swollen lymph nodes in my head and neck, pain in my neck and head, I could not open my mouth or move my jaw without horrible pain, I have joint pain and I also have a weird, tight, slight tingling in my arms (like I continute to have my blood pressure taken) and was kept in the hospital all day today for all this and Tachycardia. They belive it is due to the remicade. I also now have sinusitis. F 35 7 days
 1  Hidradenitis Suppurativa During 2nd infusion: short of breath, pulse was 145, my blood pressure was 192/110, legs tingly and numb, eyes burning, neck and jaw were tight, my jaw was chattering, feeling of nonstop adrenaline rush in chest, felt very faint/dizzy/heavy, whites of my eyes turned bright red, received benadryl and cortizone in IV, moved to ER from infusion center not sure if the benefits are worth the risks F 35
1X D

 5  ulcerative colitis tired for a couple days after. Maybe because of my anxiety from the week before stressing about the first infusion. Had to take xanax to calm down I have been living with uc for 16 years, progressively gotten worse. in the last 2 years pretty much constant flare. couldnt leave the house, pred wasnt really working for me anymore. after 1st infusion, felt INCREDIBLE! cant even ever remember feeling this good. feel like a normal person. still on 15mg pred, colazal, azasan. will see how the taper goes. F 36
 5  Crohn's and Arthritis Exhaustion for 2 days after infusion. This med has changed my life. Both diseases had been active for over 3 years, no oral medications were working. Felt better within the first day of the first infusion. I couldn't even walk for 10 minutes without hurting before I tried this. Now I can physically do things I could not for a long time and I don't worry about the location of the nearest bathroom anymore. F 36 4 weeks
5 ml/kg 1X O

 5  rheumatoid arthritis Really works for stopping my joint pain. Side effects: Itchy rash that starts at the injection site and grows over the course of the week until it's on my whole arm. To combat this, I now take Claritin and Tylenol during the infusion. I also take low doses of Benadryl during the week. I use prescription desonide cream on the rash and that makes it go away. The day after the treatment I feel very low energy. I think I may be having some nausea as well. I take 7 mg/kg. F 36 1.5 years

 4  Chrohns Fatigued, anxiety seems worse, dull headaches for several days after. My worst side effect is the extreme upper stomach pain. It takes 3-4 days after treatment before it goes away. Nausea and unable to eat for 3-4 days after. Before starting remicade my life consisted of pain pills, and laying on the couch. I would have good days but they were few and far between. I am generally hospitalized 1-2 times per year for flares. Have been put on a feeding tube twice. Since starting remicade I actually have a somewhat normal life. I still only eat soft bland food but I no longer have to take constant pain medicine. My only complaint is the severe stomach pain that has me crying in agony for 3-4 days after infusion. Then it stops until my next infusion. I get treated every six weeks. I am 36 and pray this continues to work. This was my last resort after trying all the other medications they use to treat chrohns. Have had 2 bowel reductions and before remicade was getting strictures often. Ct scan showed improvement in areas that were once ulcerated and narrowed. Remicade has improved all this. Now to just deal with the stomach pain after treatment. F 36 9 months
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