Comment from: LPW 65-74 Transgender 2 to less than 5 years Caregiver Published: May 13

After I failed on Entyvio, my gastro put me on Remicade. Two years later, Cleveland Clinic switched their Remicade patients to the bio similar, Renflexis. In the last year, after one infusion, I left the session extremely dizzy. At the next few infusions, blood pressure would initially be close to normal, but slowly escalate to as much as 180/110 by the end of the drip. And I began developing plaques on my forearm, plus itchy crusting on my scalp. As a patient with no symptoms except a presenting afternoon-evening low-grade fever and no diarrhea, I began to wonder why this mild case was being treated with a very powerful drug that causes so many side effects. I also read a couple studies that suggested that in seniors, sometimes auto-immune disease symptoms lessen — or even stop. So finally, after a very clean gut per the colonoscopy camera, my GI has let me stop. We're doing quarterly calprotectin fecal studies, and the colonoscopy will be annual instead of every two years. So far, so good. I've also lost ten pounds after stopping Renflexis. All in all, sign me much happier.

Related Reading: entyvio | remicade | renflexis

Comment from: 75 or over Male 2 to less than 5 years Patient Published: March 24

Tried several other drugs without success. Remicade generally keeps the colitis in check, with occasional minor flares. No side effects after several years of use (every 8 weeks). The time needed for trips to an infusion center can be a hassle, but it's worth it. Some worry about immune supression, especially in times of COVID-19. Am consulting with doc about this.

Related Reading: remicade | colitis | covid-19

Comment from: 55-64 Female 1 to less than 2 years Patient Published: January 10

I am 57 and I have had RA for three years.I had to stop work, cant sleep and I was having flare ups every other day. I couldn't bath or brush my teeth. I was taking Methotrexate,it helps in the beginning, but after awhile, it was no help. I was crying like a baby. Pain all over my body.My doctor was able to convince me to try it, thank God I listened.I was scared of the side effects Though I still have pain, but not like before. I have infusion every 6 weeks, methotrexate once a week. I am also taking various vitamins including folic acid, fresh turmeric and capsule , ginger, aloe Vera, fresh lime juice and exercise moderately.I have to fight this.

Related Reading: folic acid

Comment from: 55-64 Male 10 years or more Patient Published: November 28

Developed RA in 1993 and for a some years progressed through various simple over-the-counter drugs like Ibuprofen and early prescription drugs like Cortisone tablets. Eventually in the late 90s I was on Methotrexate (MTX) once a week with accompanying folic acid tablets. But in the early 2000s the MTX's effectiveness couldn't keep up with the overall worsening of my RA, so my rheumatologist put me on Remicade (with continued weekly MTX). Wow! The difference after my first infusion was like night and day. Additionally, my rheumatologist was one of the early testing physicians in Germany for Remicade, and he as many other rheumatologists here, determined that routine infusions should be administered when a patient's RA symptoms tell you so, and not simply the typically prescribed every 4 to 6 weeks. He's had just a few patients who've needed an infusion only once or twice a year, some who've needed one every 3 to 4 months, some, others every 2 to 3 months, and only some who require and infusion 4 to 6 weeks. The practice is not to excessively flood the body and only infuse when needed. I typically need an infusion every 3 to 4 months. Due to scheduling and other responsibilities I've gone 6 months and paid with pain that is quickly relieved with a few hours of intravenous Remicade. I have also been a Type 1 diabetic since 1974, and the mix of auto-immune deficiencies like diabetes and RA do not make good company in an aging person. But after over 15 years on Remicade, it is still my savior that keeps me productive at my job. My new rheumatologist would like me to switch to the newer oral RA drugs, and I'm highly skeptical. I might try it, maybe not. But like the saying goes: If it's not broken, don't fix it.

Related Reading: ibuprofen | folic acid | remicade

Comment from: Dragonlady 65-74 Female 5 to less than 10 years Patient Published: July 12

Diagnosed with RA 9 years ago, the same month I retired! Started out in a wheelchair, started on methotrexate, no relief. Moved on to Remicade 4 vials every 6 wks. I could walk, brush my teeth, take a shower, etc. I could feel it working as it flowed through my system. It has been 8 yrs now and I'm at 6 vials every 5 weeks but the effects end now at about 7-10 days after infusion! Had blood work done to determine if I have antibodies to Remicade. Afraid I may have to switch to heaven knows what. Have had a bad flare last month, hands, feet, knees, shoulders, wrists have been miserable. I pray for good results and pain relief for all RA patients!

Related Reading: remicade

Comment from: pastagirl 75 or over Female 10 years or more Patient Published: June 07

I was diagnosed with RA 10 yrs ago. But I was in denial for several years before that. I went to USC in Irvine for a second opinion and met Dr. Andrews, the kindest and most caring doctor I have ever met. He prescribed 300mg. of Remicade to be given every 8 weeks. He also directed that a small dose of Benadryl be administered before the infusion. Very that you do not have a reaction! Remicade worked like magic for 10 years. Unfortunately it isn't working as well now. I just spent the day researching alternative meds. and it is frightening to see all the bad reactions to other drugs. One thing I noticed on reviews of Remicade is that most people that had reactions likely weren't given something like Benadryl or Claritin before infusion. My opinion, but I think it may have helped me to not have a opinion. So now I have to make the decision on which med I should go for. Oddly, my new doctor (Dr. Andrews went to Australia to practice with his son) is leaving it up to I should know how to treat myself!

Related Reading: remicade | benadryl | claritin

Comment from: Jllo97 35-44 Female Patient Published: June 02

Been using this for a year and a half for RA. I have failed 5 other biological and Rem has worked very well for me. I’m certainly not perfect, but I can go about my daily activities again, unlike the 5 years prior to this treatment. Everyone’s body reacts differently to any med, but this one has been a miracle for me. Since it’s too expensive to get in the office, my rheum has arranged an order for a nurse to administer it in Home.

Related Reading: treatment

Comment from: 55-64 Female 1 to 6 months Patient Published: July 15

Monthly infusions worked great but developed an allergy. No other medications have worked as well.

Related Reading: allergy

Comment from: Mary F 55-64 Female 1 to 6 months Patient Published: July 11

An infusion every 8 weeks...hopefully on my way to remission. A true life saver.

Comment from: Sheila 45-54 Female 1 to 6 months Patient Published: March 31

I am only on my 4th dose and the only draw back that I have seen is weight gain and shortness of breath witch I am relating to my weight gain!! I have had no flare ups what so ever!! Overall I am happy so far!!

Comment from: Amzel 35-44 Female 1 to 6 months Patient Published: March 11

Remicade suppressed my psoriasis immediately. HOWEVER, after the 4th treatment my liver enzmyes sky rocketted!! I immediately stopped the medication and 3 months later got my enzymes back to normal. About a month later I started losing my hair, red palms, pale nails, anxiety, heart palpitations, and severe fatigue, and arthritis. I never had a bad reaction to any of the biologics except Remicade. I believe now I have some liver dysfunction and I pray I can reverse this! When I researched Remicade and other testimonials I read many people develope othe autoimmune diseases and liver disease. It may not develope right away so it never gets added to the Remicade warnings portion or tallied up to how many people have bad reactions. All I had was psoriasis prior to Remicade and now I feel like I'm slowly dying. You can treat your disease with food. I kicked my psoriasis back by eating more alkaline, taking milk thistle, and juicing with chlorophyll. I wish I would have known this years ago. Now, I'm trying to treat the other symptoms that Remicade has brought on and I pray I can reverse it! Please..... with all my heart do not take it! Try the natural way. It took me about a month but then my psoriasis went away. Look up Jason Vale, I started with his regimens. Good luck and God Bless!

Related Reading: remicade | psoriasis | treatment

Comment from: 45-54 Female 10 years or more Patient Published: February 28

I have had rheumatoid arthritis for almost 35 years now. I have taken a lot of different medicines but Remicade has been the best one for me. Never had a problem with it until last year. I was getting my infusions every 7 weeks for the last 10 years. I felt like superwoman until I came down with disseminated histoplasmosis. Even though I nearly died from that fungal infection, I would go back on Remicade in a heartbeat if my Doctors would let me. I really miss it and I worry about my RA getting worse without it.


What Is Rheumatoid Arthritis (RA)? Symptoms, Treatment, Diagnosis See Slideshow
Comment from: Nancy 65-74 Female 1 to 6 months Patient Published: November 18

I have had only 3 infusions. After first - no side effects. After second, 4 days later I felt like I had the flu, fever of 100 lasted for days, aching back, could not sleep. After third infusion, I got sick about 4 hours later. Nauseated, light headed, swelling joints, inability to undress and difficulty getting into bed. Fever of 100. I think I am allergic to this drug, but my doctors won't concurr. I want to return to Enbrel, but my insurance won't start to cover until I pay $8K out of pocket. I hate this drug and am fearful I could die.

Related Reading: flu | enbrel

Comment from: SG 13-18 Male Caregiver Published: October 14

My son was diagnosed with mild/moderate Crohn's in late 2015. He was 15 at the time of diagnosis and has been on Pentassa since. Tests in Aug of '16 showed worsening of the condition. He received his first Remicade infusion a few days ago. He felt OK after the infusion but missed school the next day due to short term dizziness and prolonged fatigue. He did go to school the 2nd day after infusion. He'll have 2 more infusions in the next 6 weeks and then go on an 8wk cycle. I rated this 3 stars since I have to rate it to post. I cannot say whether it is effective or not at this time. The posts on Remicade and the other meds have been extremely helpful. I hope this is helpful to someone and I hope I plan to revise this (if I can)as my son's treatment progresses.

Related Reading: remicade | dizziness | fatigue

Comment from: Ronxn 25-34 Male 1 to 6 months Patient Published: September 25


Comment from: Mtorres 45-54 Female less than 1 month Patient Published: July 27

This is going to be my second remicade infusion. I must admitt I was very scared it would not would, but after my first infusion its been two weeks and I feel more normal than I have in awhile. I don't want to jinx it since humira did not help me.

Related Reading: remicade | humira

Comment from: That guy 55-64 Female less than 1 month Patient Published: July 26

As said by most, Prednisone use to get me remission but this flare is in its 7th month and started Remicade recently. Stuff works for 4-5 days than loses its effectiveness. No side effects yet. With 8 week in between doses I think I'll need either higher dosage or more frequent visits for dosing,

Related Reading: prednisone | remicade

Comment from: 25-34 Male 5 to less than 10 years Patient Published: July 14

I have been getting infusions every 7 weeks since I was diagnosed with Chrons 5 years ago. I was hospitalized for 8 days prior to my diagnosis, having attacks every day until it got so bad I had to go to the ER. I was put on Remicade from the very start, and I have been in remission ever since. I did have to up my dosage about 2 years ago, but no problems since. This drug is amazing. Without it I would not live the life I do today.

Related Reading: remicade

Comment from: 35-44 Female less than 1 month Patient Published: February 29

Adverse effects. Sexual disfunction


Medical Editor: John P. Cunha, DO, FACOEP

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