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May Be Starting Remicade... seems extreme.

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Crohn's Disease
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Posted 8/18/2015 9:19 PM (GMT 0)
Hi there,

I was diagnosed with Crohn's Disease in 2006 and I am now 22. I was in the hospital for a month with severely active flare up.

I was prescribed 6MP, Prednisone, and some daily pik-line infusions for a month. I was then eventually switched to Methotrexate and Lialda and then just recently in the last year taken off the Lialda when switching physicians in a new town.

My Crohn's disease has been very mild, little to no symptoms since I was in the hospital and still do not have any discomfort to this day. So much so, that I have only realistically been taking my methotrexate monthly for the last few years (suppose to take weekly). My new doctor for the last year has suggested switching to Imuran because of the liver damage that methotrexate can cause.

However, 2 weeks ago I went into my first colonoscopy in several years as a check up and for biopsies. The results were "lower intestine - ulcerations and granulation tissue" and "rectal ulcer revealed acute inflammatory change." ... and from other tests I have a small fistula.

Because of this my doctor suggested that I go on Remicade. This to me seems a bit extreme as it seems that most people that go on Remicade have severe daily symptoms and have tried many other options. And I, thankfully, have little to no discomfort. I am weary of the side effects, and it seems like 70% of the people that take it receive minor side effects (minor head pains or restless sleep).

I am finally on my own with these decisions and with having a fairly new doctor am weary. Should I look into other options before starting Remicade?
Posted 8/18/2015 9:46 PM (GMT 0)
Either Humira or Remicade are used to treat fistulas usually very successfully.

I've been on Humira since February 2014 and the only side effect I had was horrible headaches after doing my injection, so I take an antihistamine before I go to bed the days I do my shot and that's cleared the headache issue up.

I take Humira weekly, and still no other side effects, I'm just glad it healed my colon, rectum and recto-vaginal fistula inflammation I had and no major side effects or issues since I learned about using antihistamines for those horrible headaches.

Fistulas can get severely out of control, I'm assuming that's why your GI wants to put you on a biologic, they have the best success rate for clearing the fistula inflammation up, the tract will remain forever though...so if you flare again, chances are the fistula will become an issue again.

The risks are very low and I was surprised I didn't get more than those headaches because I'm either allergic or non-responsive to the traditional oral RX used to treat IBD. You may not feel much symptom wise but that doesn't mean damage isn't being done if you're still inflamed (flaring) mild symptoms or not, and that's likely why the fistula appeared.

Often with Remicade they like to use another drug like Imuran to reduce the risk of developing antibodies to the Remicade, with Humira that doesn't seem to be much of a concern which is a good thing for me cuz I couldn't tolerate Imuran or any of the other oral RX.
Posted 8/18/2015 9:53 PM (GMT 0)
If you have developed a fistula, then your disease has not been mild at all. Your *symptoms* may have been mild, but your disease has not been.

Your new doctor is entirely correct in his/her suggestions.
Posted 8/19/2015 2:24 AM (GMT 0)
I second what @beave and the others have said. Remicade is very successful at healing fistulae, which is a sign of your disease being more serious, whether or not the symptoms reflect that.
Posted 8/19/2015 8:21 PM (GMT 0)
That's the problem with this disease is that it can be doing a lot of damage whether we are feeling it or not. Eventually it catches up with us though. I thought my disease was rather mild too. Only to have a colonoscopy and they find severe damage through out my colon. I've had severe symptoms ever since as well. It all kind of creeped up on me.

I love my Remicade. I also take Methotrexate weekly. It's helped a lot.
Posted 8/23/2015 2:49 AM (GMT 0)
Thank you for your responses.. this has taken a little bit of the ease hearing positive news!

However, I have scheduled a second opinion in a month to see if this other physician thinks another medicine would work. I'd rather take a pill then have to do hourly transfusions and cut down on cost.

But if he also suggests Remicade, I will start it and pray for no side effects.
Posted 8/23/2015 4:37 AM (GMT 0)
Remicade and Humira both have programs to help cover any cost that you cannot (in Canada for sure and I believe in the US as well) so don't let cost deter you, far as I know biologics are the only meds that will treat fistulas and you don't want to risk your small fistula getting out of control...a second or third opinion never hurts, best of luck with whichever route you choose.
Posted 8/23/2015 8:50 AM (GMT 0)
'mild' symptoms are misleading: it's what scopes show that count. I'd have gotten on Remicade from the beginning if I could have done, and thus maybe avoided two surgeries and having a stoma for 2 and a half years. Basically, Remicade is your best option. It's also better to take it before your disease gets so out of control, nothing works.
Posted 8/26/2015 12:47 PM (GMT 0)
I have been taking Remicade now for a year. Best thing I have done so far. But the two fistulae I have are still active.
Posted 8/26/2015 7:17 PM (GMT 0)
I am somewhat in the same boat as you. I was feeling well but my scope and mri results showed much different. My doctor told me I should go on Remicade and I thought it was a bit extreme. However, after seeing my scope results it scared the crap out of me so I was willing to do whatever it took to get better. I have horrible veins and the thought of getting an IV every 8 weeks is horrifying to me so I asked my doctor if I could try Humira first. She agreed and I just did my first set of injections today. I have heard amazing things about Remicade but I am using it as a last resort. I am praying the Humira works, maybe ask your doctor about Trying Humira first? Good luck!
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