Remicade

Hi, how long has anyone been on remicade and is it safe in the long term? I've been on it every 6 weeks for almost 2 years now and no signs of my gastro stopping it... thanks

[coughting]

I was only on Remicade a short time.  It did wonders for me while I was on it.  However, due to fistula I ended up with surgery.  I started feeling much better after the 2nd or 3rd treatment.

I am sure there are others out there who can help you.  I did mine at a clinic that provides that service.  My GI said it would be cheaper that way.  I would see the doctor in that clinic who was assigned to me every other visit.  They do keep a close watch on you and I like that.

My gastro had told me that I would be on it for life to keep the crohns in remission.  I would assume you would be also or until it quit working, then they would try one of the other treatments they have now.  The good thing is that there are other treatments now so if it does quit working you have other alternatives.

Good luck,
Jayne

[lizziecee]

Hi.... guess you live in the Uk, so perhaps my own experiences with Remicade are relevant.

I was on methotrexate tablets for some 6 yrs, then moved up to 25 mg weekly injections that I did at home for the past two years. Last year was my own annus horribilis - a nightmare with a pulmonary embolism in my right lung, resection of both small and large intestines, a severe flare and then to cap it all, pancreatic insufficiency - my pancreas has stopped working;  a rare complication of Crohn's,  so now taking Creon enzymes each time I eat, so I can metabolise my food. I am terribly underweight at some 102 lbs, but with significant diarrhoea, I understand why. I am eating well for the first time in some 3 yrs.

When I was very ill last July, having stopped methotrexate the previous November in order to get well enough for major bowel surgery, which entailed two and a half months on a naso-gastric tube to feed me to put enough weight on for the surgery, my gastro at long last recommended Remicade, along with re-commencing methotrexate. We had talked about Remicade for many more years than I can remember, but in light of my breast cancer in 2003, he would not prescribe it, as it can, and does, cause lymphoma.

Well, he said he had no choice, and I agreed, as my C-=reactive protein level was 270, when the norm is 5 or under. It was life or death time. I did get a little better,with both methotrexate and Remicade, but things went downhill with uncontrollable faecal incontinence after eating breakast, so much that I was frightened to eat if we had to go out.

To cut a long story short, I saw my gastro 2 weeks ago and he has discontinued my methotrexate injections after an allergic reaction 2 weeks ago,  so now my only immuno-suppressant is Remicade, which I am having as a day patient in Derriford Hospital , Plymouth, every 8 weeks.

After some 40 yrs of Crohn's I feel very fortunate to be alive, and have other drugs to keep my disease in remission, other than steroids. My gastro will not prescribe these for me anymore, as I got steroid induced psychosis when diagnosed with breast cancer.That was terrifying, but my gastro said was not at all unusual being diagnosed with a life threatening disease.

I do know and completely understand the long term side effects of Remicade, particularly lymphoma, but feel I have no option, other than perhaps switching to Humira. Cimzia was used to treat intractable Crohn's, but was discontinued because of life threatening side effects, and indeed some deaths...so perhaps I will stay with Remicade. Too soon to tell, as I have only been having these infusions since last July.

It is a minefield for me...knowing what to take ... do the best I can with a brilliant gastro. Still need codeine phosphate and loperamide daily to control the morning diarrhea, plus Calcichew/Vit.D for my bones (30 yrs of steroids have given me osteoporosis and osteo-arthritis in hands, hips and feet.)..now taking glucosamine from my GP for the latter, which is helping with the pain.

Current problem is rotator cuff crumbling in my right shoulder..had x-rays last week, need an MRI, then either physio or surgery. It just goes on and on, but still wake up each morning, if not smelling the roses, glad to be alive, and a big smile on my face.

Guess you must make your own mind up, as I have done...there are side effects with every drug, even aspirin, but at least we have a choice.

Take care,
Liz.

[spurscouk]

Thanks for your experiences, I've been through worst time as well, 3 months in hospital in 2008 on TPN before surgery and recovering now on remicade. But on it for life?? I'm 35 now so I suppose thats not bad, by the time the serious side effect kicks in I'll be lying in bed anyways...lol

Guess I'll stick with it for now; God has been gracious to me so far. I'm taking lots of probiotics, vitamins and meal replacement as well so I have more energy every morning and its helping me a lot.