I have had crohn's disease for the past 30yrs. December 2012 had a VERY bad "flare-up" and usual Rx that worked in the past (i.e. prednisone) have not had an impact on the crohn's unless I am on 60+ mg dose per day. Doctor recommended REMICADE..had my 1st treatment last week and I have had no negative side effects. I am a bit apprehensive about the next few treatments as I have read only BAD side effects and no one with a good experience..anyone out there who is currently being treated for Crohn's with Remicade and willing to share your experience?? Thank you
Remicade-anyone have a GOOD experience?
Question posted by cashmoney on 23 April 2013
Last updated on 10 June 2020 by BarryD1
The information on this page reflects personal experiences shared by our community members. It is not reviewed for medical accuracy and should not replace professional medical advice.
5 Answers
I have had v eye good results for this last 8 months. Started October 2019. No side effects except being very tired after first infusion. But none after that. I get infusions every eight Weeks. I’ve noticed that I start getting bouts of RA before my next infusion. After my fourth infusion it started a week prior to next infusion. But it’s sixth infusion the R A was active three weeks prior.
I had 6 infusions so far I'm feeling a lot better been in a flare up for 2 years,but after in fusions things are fetter better and my right ankle/ foot swells and now I can't sleep well but tie seems too better a least I can go outside Now!!! LOL but no more side effects good is out weigh bad.
thanks for your feedback..getting ready to have a 3rd infusion tomorrow (wed. 05/15) and hope I can see more beneficial results... now I see slight improvement but more negative side effects..sore throat, aches, lethargic... malic-blah feeling... why couldn't you go outside?? If you don't mind me asking how old are you. I am female and 47
With ulcer colitis you can't control bowelmovents so unless you have depend on you might be in trouble!! So I didn't want to take chance.I'm 49 so had to stop work and became hermit, but infusions have made things a lot better not sure why you need infusion but hopefully you feel better too Good Luck 3rd a charm!
We are very close in age. I too have to know where ALL the bathrooms are whenever we go out and if there are no bathrooms (park or hiking) forget about it... u can count me out :) I have crohn's disease..had it for 30 years and over this many years it has done damage and it's even more difficult to get back into remission. I had to quit my job///WHICH I LOVED because of the constant complications and extreme fatigue from this god awful disease. I want my life back!!! When I have an infusion treatment I am wiped out. I had no energy from the Crohn's disease and now my energy (what is left) has been zapped by these treatments. I have only noticed subtle positive changes in physical health... guess it is going to take time before I am close to feeling better... will keep you posted on how my 3rd treatment goes which is today... I live in Tampa Bay area-Florida.
How did infusion go? Hope your better make sure you drink lots of water after infusion , don't go around anybody ill for next couple days.
Had infusion #3 Wednesday and no problems. I am feeling slightly better. I believe this type of therapy is going to take a long time before I see and feel noticable improvements..just happy it's not having a negative effect because surgery would be my only option. Now my following appointments instead of every 2wks is 1x a month.
I have been on Remicade for 3 years and feel like a new person. When I first started I felt some what better but still had flare-ups to the point of having another resection. After the surgery I feel as though I have been cured but I know it's the Remicade. I can now live a normal life because of the Remicade. One down side to it is; I am having lots of cancers removed from my arms and legs. My brother is a Crohn's Disease patient also and has had many surgeries (we both have about 8 feet of intestine left. Our Mother had Crohn's Disease also) My brother is also having problems with cancers on his arms and face. I think until there is something better, I'm sticking with the Remicade. I live a normal life and hold down a full time job.
By the way, I have been a Crohn's Disease patient since 1982.
Hi Judy-lynn
I am glad to hear you had good results from Remicade. I think it is too early for me to tell... I am impressed with the fact that you can hold down a full-time job. I had to leave my position and am very depressed about that but I did not want to land back into the hospital (was in 12/2012). I was getting worse. I miss working. I am college educated and miss the interaction and $$$$. I really want to get back to work but if I don't get this Crohn's disease under control before I get back into the workforce I will be right back where I started (in the hospital)... aaaahhhh it's quite frustrating yah know
Hi cashmoney.
I too have had crohns-colitis for many years, although they didnt know much about it then. Ijust finished my 3rd. remicade infusion last week. The only effect I had was swelling of m y feet and ankles, and too be honest i am not sure it was the remicade as I am a smoker and swelling sometimes happens.
I am sorry to say that the infusions dont seem to be helping much. The doc added prednisone with it this last time as pred is usually the only thing that helps, but its side effects have now gotten bad.
We decided to try the new med. called Uceris. Only been out a few months.. The remicade is Very expensive even though I had them done at home. Uceris is expensive too, but not as bad. I didnt expect miracles, but I did hope.
I have read that it has worked for other people after at least 2 infusions, so doesnt hurt to give it a chance! Hope it works for you. Please keep in touch with us and let us know.
Linda (lovemycats)
Hi Linda. thanks for the feedback. Going to have my 3rd infusion tomorrow. I have noticed a slight decrease in abdominal swelling but ache all over the 2nd week after my 2nd treatment and energy... don't have any. Will follow-up with results from 3rd treatment... as of yet too early to tell and I am not impressed. Cashmoney... love my cat..
Hi there.
I have had 3 infusions so far and havent noticed any real change. I am not having any side effects though. My doc. is adding a new drug called Uceris, it is a cortocosteroid like entocort, but stronger. We are hoping that the combination will push me into remission. If not hes going to start me on tysabri infusions. Beginning to wonder if anything will work, but trying to keep my hopes up. I have heard that sometimes it takes several infusions. I will just have to wait and see. I wish you luck, and keep in touch!
Linda
Cashmoney here;
Had my 3rd remicade tx last week..thank god no crazy side effects..BUT don't feel any better. Energy level is still at an all time LOW. I am a person who likes to keep busy and moving. Anything that requires bending twisting like I washed my car last weekend and the bending and twisting caused my abdomen to swell up like a pop belly pig :)... will it ever end..
cashmoney, I am not on Remicade but Humira I have read alot about he 2 meds. I do know that more ppl have reactions to Remicade cuz of the protien it is made of than Humira. Remicade is made from a mouse protien and Humira is made from a man made protien that is closer to a human protien. I have heard alot from ppl on Youtube that say Remicade has worked wonders for them. You might want to look up a Youtuber by the name of Sara Ringer she is a advocate and talks alot about Remicade and things that she does that helps her with the infusions. Hope this help and check out Sara you might like what u hear from her.
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Further information
- Remicade uses and safety info
- Remicade prescribing info & package insert (for Health Professionals)
- Side effects of Remicade (detailed)
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