Do you take Remicade

[Mark24]

I have had Crohn's for 9 years and am on 6MP and Entocort, My Gastro now wants to put me on Remicade. I am leary because of the recent FDA black box.
What do you do for nutrition????

[monalisa1136]

I have  been on Remicade and Methotrexate for about 4 years now. I was diagnosed with R.A. and I also have IBS. I have been  having severe cramping and all that  goes  with it.  Not fun. I  have read  information here   online. And I find it hard  to see a difference between IBS  and crohns  disease.   Does anyone have a comment?

[thesinger19]

I was diagnosed with crohn's almost 9 year ago already. I'm 18(almost 19). I started with the sulfas then was put on 6mp. I am now taking methotrexate and remicade. I was on humira but i didnt like it? I dont know if I am helping. Anyway I couldnt tell you much if it helped because I have never been in dire need of help with my crohn's. I do have arthritis (had that before i did have the crohn's) and I use it for that as well. Let me just say that it worked wonders for the arthritis after the first infusion the arthritis disappeared like magic by the end of. I guess for the crohns as well because they do come hand in hand, once one is flared the other will as well..

[coughting]

I was having a crohn's flare up and losing weight, couldn't eat, fever etc.
I was put on Remicade and it was a miracle drug for me.  I did not have any side effects.  I guess we waited too long to try the drug as I had developed 2 fistula, one to the bladder and could not cure the infection.
So I had bowel resection and everything has been in remission since.  I chose to get off the Remicade as there are now other drugs that I could try.  But I would definately try the Remicade.  Everyone reacts to drug differently.  Hopefully you will do well.

Jayne

[nita40]

ive had crohn's disease since 1994 and i have been on all meds myh last resort has been remicade treatments , and it has been working the only draw back for me is my body aches after treatment....and also i have to get put to sleep because of the side effects...such as tightning of the chest , nausea, vomiting, hives and ect. i get it all...i feel like im on chemotherapy

[JenErin]

I was diagnosed when I was 18 with Crohn's and am now 24. I am currently going through a horrible flare and am on Humira now. I took Remicade to calm down my last flare and it worked wonders when nothing else would. It put me into remission and allowed my body to heal itself. It does lower your immune system, so you can get sick more easily. If you wash your hands and take care of yourself, this shouldnt even be an issue. I would recomend it. It made me feel normal again. The only draw back is having to go in for the treatment once every two months for a few hours.
I am currently on Humira which is like Remicade. I've only been on it for two months, where as I was on Remicade for two years . Both are supposed to do the same thing in the body. The only difference is Remicade is a made-protien where as the Humira is a human protien. With Humira you give yourself a shot every other week.
So far, after using both, I prefer the Remicade. I didn't mind the treatments as much as I do the Humira even though the Humira is more convienient (I hate having to give myself a shot.) Plus, I'm not sure if it's that this flare up was more intense than my last, but the Remicade worked faster and better for me.
I would recomend discussing any further concerns with your doctor.

[lizziecee]

Welcome to the Crohn's Community forum Mark.

I amm sorry I can't help you with Remicade, as my gastro refuses to prescribe it for me, because of side effects connected with my recent breast cancer.  My Crohn's is kept under control with weekly injections of 25 mg methotrexate, and 3 mg tablets daily of entecort. I do the injections at home - real easy, only takes a couple of minutes, so no tedious 3 hr round trip to the hospital. The local GP's nurse is unwilling to do cytotoxic injections.

I have been experiencing a severe flare for about 2 months now and have been unable to eat, consequently losing some 24 lbs. My gastro has prescribed Fortijuice (comes in 9 different flavours) and I drink 3 bottles a day. Each bottle is 300 ml and contains all the vitamins and minerals one needs on a daily basis, and has 300 cals. Not enough to put on much needed weight, but enough to keep me alive whilst my meds deal with the current inflammation.

You could try a low fat, low fibre diet with as much protein as you can manage i.e. chicken (not fried, poach it in chicken or vegetable stock), creamed potatoes, fish, eggs etc. and stay clear of fibrous foods like cereals, wholemeal bread, pulses (beans,peas,lentils), raw vegetables and salads. Home made vegetable soup, blitzed in a blender, is also good nutrition.

Hope this helps.
Liz.