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Starting Remicade

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Crohn's Disease
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Posted 10/18/2011 12:59 AM (GMT 0)
Here’s a little history about me:

24 year old male
-2001 – Diagnosed with Junior Rheumatoid Arthriris which went away after taking Naproxen for a few months. Tested positive for HLA-B27
-February 2011 – Uveitis – Eyes improved after 3 months of Prednisone, Prednisolone eye drops, homatrophines, and then Methotrexate
-September 2011 – Diagnosed with Crohns Colitis after colonoscopy. I’ve been tapering prednisone, taking Lialda, and switched over to a gluten free diet. I’ve been feeling good. All my symptoms are gone for the time being.

Last week I followed up with my GI and he recommended I start Remicade to combat all my symptoms.. He was really pro-remicade. I asked him if there were any other alternatives and he basically said no. He told me I would most likely flare up again 3, 6, 12 months down the line and go back on steroids which can be more dangerous than Remicade. So that along with my own research convinced me that I should start the treatment. I’m scheduled to start in about two weeks. However, I’m starting to really regret my decision. I’m not sure what to do. I feel pretty good as of late but it’s most likely because of the Prednisone which I never want to take again. Any advice? Have I really exhausted all my options at his point?

Sorry if this should be in the UC forum. I'm not sure where to go.
Posted 10/18/2011 1:48 AM (GMT 0)
Seems like your GI is a proponent of the top-down approach (starting with the heaviest drugs first). It's more common to work your way up through the various drugs available, however. At the bottom, for want of a better way of putting it, are the 5-ASAs, of which Lialda is one. They're the anti-inflammatories. Next up are the immune suppressants, mainly 6MP and azathioprine (Imuran) but also methotrexate falls into this category. And then there are the biologics, of which Remicade is one of course.

I gather your GI didn't mention 6MP or Imuran? There's also the possibility of trying another 5-ASA or upping the dose. Or choosing a different delivery method. (Suppositories are commonly used in UC...)

At any rate, I wouldn't have said Remicade was your only option at this stage. At the least I think if I was in your position I'd want to taper the steroids some more and see if all the old symptoms come flooding back. (Actually I am in that situation as it so happens. Am on pred and about to start tapering off it.) If they do, that's a surefire sign your disease wasn't brought under control, in which case you might want to go on Remicade after all. But if they don't, then I can't see why a milder maintenance drug wouldn't be sufficient.

The only other thing I would say is that, symptoms or no symptoms, stay on a maintenance drug of some kind. Crohn's can do its thing with sometimes very few symptoms, leading to worse trouble in the future.
Posted 10/18/2011 1:50 AM (GMT 0)
The only other medications I can think of are the immunosuppressants (6MP or Imuran). They're definitely a lot more easier/convenient to take than Remicade, but they still have their fair share of risks and side effects. That being said, 6MP did nothing for me but Remicade has basically been a miracle drug for me and I'm almost symptom-free after starting it in August. However, if you're really on the edge about it, then maybe call your doctor and see what they say about trying 6MP or Imuran. They've been out for a while and helped a lot of people and are definitely a long-term treatment that can work.
Posted 10/18/2011 2:03 AM (GMT 0)
Thanks for the suggestions. He did discuss 6-MP, but only mentioned how he likes using it in conjunction with Remicade. Maybe I could give methotrexate another shot. My dosage was really low.

Maybe I'm just reading way to much... Its good to know I have other options.
Posted 10/18/2011 5:50 PM (GMT 0)

amjwh99 said...
Here’s a little history about me:

24 year old male
-2001 – Diagnosed with Junior Rheumatoid Arthriris which went away after taking Naproxen for a few months. Tested positive for HLA-B27
-February 2011 – Uveitis – Eyes improved after 3 months of Prednisone, Prednisolone eye drops, homatrophines, and then Methotrexate
-September 2011 – Diagnosed with Crohns Colitis after colonoscopy. I’ve been tapering prednisone, taking Lialda, and switched over to a gluten free diet. I’ve been feeling good. All my symptoms are gone for the time being.

Last week I followed up with my GI and he recommended I start Remicade to combat all my symptoms.. .

"all my symptoms", meaning that your other diagnoses, as well?  Perhaps from the GI's point of view, Remicade is the best option for you because of crohn's and the rest of your health history?
Posted 10/18/2011 9:45 PM (GMT 0)
Hey there,

I see prednisone as a bandaid..it only takes care of the problem for a bit, I wish my GI would have started me on remicade as soon as i was diagnosed...Trust me YoU do not want to be in extreme pain, if dr recomended remicade START it before your sympthoms come back

Just my thought
Posted 10/21/2011 1:05 PM (GMT 0)
I was on Imuran for a few years, then has problems again, so my doctor started me on Remicade.  So I was able to stop the prednisone (until I have a flare up), and have felt good for a long time on both those drugs.  Remicade is a very good drup to prevent the problems you have.
Posted 10/21/2011 1:46 PM (GMT 0)
Hi and welcome amjwh99,

I have Crohn's and suffered from eye inflammation too (episcleritis and scleritis). I have tried A LOT of different drugs--prednisone, MTX, Imuran, Pentasa, Entecort (however you spell it), etc. and nothing has worked for me like Remicade has. I have found Remicade to be a HUGE blessing in my life and it has really helped to keep the Crohn's under control. It did sound scary to me at first and I tried to get out of it, but I'm so glad I didn't.

I wish you the very best of luck and please keep us posted.
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