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Crohn's Disease Forum » Treatment » Is it worth it to be on Remicade in my case?


08-14-2017, 01:40 AM   #1
zHassanz
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Is it worth it to be on Remicade in my case?

Hello everyone,

I have had Crohn's for over 4 years now, and I have been the longest in remission for a couple of weeks. I have Crohn's in the stomach and ileum, and the one in my stomach is the one that flares and kills me every single day; heartburn, indigestion, nausea, vomiting...etc.

I have lost so much weight and I can barely eat, but I don't have any of the symptoms that you guys mostly mention here about diarrhea or having to spend hours on the toilet seat. I'm not even sure if I'm having it better or what, but I'm sure we're all suffering.

I have already been on Imuran for over a year, and tried methotrexate for a couple of months and both with no hope. I have had my share of Pentasa and Solupred (Prednisone) and it seems that nothing comes to help with my symptoms.

My doctor is currently suggesting that I go for Remicade, and my insurance won't be covering the whole thing, so I will have to be paying part of it. My question here is, for a person with symptoms like mine, is it worth it that I go for Remicade? I mean, I have read about its side effects and boy oh boy, I feel very intimidated already and I'd rather not take it, but then again I wanted to the advice of the experts here.

So, what do you guys think? Should I go for it or just continue being on Imuran?

P.S: I'm on symptomatic treatment for all the symptoms I have mentioned, but it is still not fun at all to have to take all those meds every couple of hours.
08-14-2017, 02:49 AM   #2
Guerrero
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Yes I think your doc is right, as your crohn's is in the stomach and ileum, i'd not give it the possibility to expand more or damage your gi tract. There is more chance remicade put you in remission, as it is more effective than imuran.
Regarding side effects imuran also have many, remicade is not much more risky. Dont hesitate to discuss that with your doctor and evebtually other members on remicade on the forum here
08-14-2017, 03:42 AM   #3
zHassanz
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Yes I think your doc is right, as your crohn's is in the stomach and ileum, i'd not give it the possibility to expand more or damage your gi tract. There is more chance remicade put you in remission, as it is more effective than imuran.
Regarding side effects imuran also have many, remicade is not much more risky. Dont hesitate to discuss that with your doctor and evebtually other members on remicade on the forum here
I haven't experienced any of Imuran's side effects, and you know I just feel comfortable taking it and even when I was changing to methotrexate I was so afraid, but there were no side effects either. The fact that this will cost a lot of money is what makes me question whether to proceed or not.

My doctor doesn't seem to be that aware of the side effects, he just says it's nothing serious and just stuff written on pamphlets and that's it. Not so reassuring, you know.
08-14-2017, 05:12 AM   #4
ronroush7
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I would go with what your doctor says since neither the imuran or methotrexate seem to be doing anything.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
08-14-2017, 08:26 AM   #5
Lisa
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I have been on Remicade with very few side effects for over 10 years now...the issues that I do have pop up now and again are nothing compared to the disease itself and the damage it was doing to my body.....

If what you are on right now is not helping, you need to seriously consider stepping up the treatment and going to the next level.....
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
08-14-2017, 03:10 PM   #6
Caitlyn336
 
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One thing to look into that is available in the US is the Remistart program. This can help cover some costs that insurance does not. I do not know if it or something like it is available there, but it saves a lot so definatly worth looking into if cost is a worry!
08-17-2017, 01:40 PM   #7
zHassanz
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I would go with what your doctor says since neither the imuran or methotrexate seem to be doing anything.
I know it sounds like I just don't want to follow what my doctor says, but it has to do with my anxiety of losing my job or something if the side effects were worse than my current state.

I have been on Remicade with very few side effects for over 10 years now...the issues that I do have pop up now and again are nothing compared to the disease itself and the damage it was doing to my body.....

If what you are on right now is not helping, you need to seriously consider stepping up the treatment and going to the next level.....
That's very reassuring. Thank you so much for sharing such experience with me. I think I just need to man up and give it a go.


One thing to look into that is available in the US is the Remistart program. This can help cover some costs that insurance does not. I do not know if it or something like it is available there, but it saves a lot so definatly worth looking into if cost is a worry!
Unfortunately, we don't have anything similar to this. I have even tried to raise awareness of the disease back when I was in college, but it was of no hope.

I have looked into every single possible way to get it for free or for a fraction less than the price I'm going to pay, with no luck. :/
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