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Crohn's Disease Forum » Treatment » Remicade/Infliximab » A note to all remicade users.


08-15-2015, 02:14 PM   #1
sickinlk
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A note to all remicade users.

Hi All,
Its been a long time. Ive been really well this past few years thanks to remicade. ive been on it nearly 3 years and after a good 6 months or more of messing with dosage and frequency i reached remission. i was so good i went back and did a course which qualified me to be a healthcare assistant. i didnt stop there and applied for college and got in. ive just finished my 1st year of a 4 year nursing degree.
I was forgetting i had a chronic disease and decided to try an go off remicade as a trial to see how i'd do.
Naturally enough the first few months were ok as the drug was still in my system but 3 weeks ago I started to get symptoms. slowly but surely its been getting worse and then the blood came back.
What was i thinking?
Saw my GI yesterday and she said no messing about and I needed to get back on it asap. Had to get a chest xray and new mantoux test for TB and Im good to go.
Maybe i needed a reminder but im grateful that my GI made the decision.
thanks for reading
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Julie 36 y/o female.
dx'd with UC in june 2011.
intolerant to 5 asa's caused pancreatitis!!
steroid resistant
on remicade since sep'12. doubled the dose in june'13
May'13 added 6-mp. on 75mg.
CAme off remicade April '15, hoping to get back on it asap.
08-21-2015, 09:54 PM   #2
araceli
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Hello. I am sorry your symptoms are back. I hope you get better soon and remicade keeps working. Thanks for sharing.
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Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
08-22-2015, 10:02 AM   #3
sickinlk
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My own fault really. Never should of stopped. Thanks for support.
08-22-2015, 01:40 PM   #4
my little penguin
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Hope it works for you the second time around.
Are they pre treating with steroids ?
Typically when you stop risk of reaction increases.
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08-22-2015, 01:44 PM   #5
worriedboy
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I see more and more Crohnies here on the forum that go off their maintanace drug and start flaring few months afterwards... ge tme thinking that until they find something better to treat us, we should stick to the current protocol like good kids and be happy if we are OK.

I hope that Remicade will kick back in quickly and that you get back into shape so you can move on with your degree. Good thing that you responded right away with no hesitation !


And I think it's awsome that you are studying for a nursing degree, btw.

Feel well and keep us updated
08-22-2015, 05:54 PM   #6
sickinlk
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Awh shucks worriedboy. Yea I'm gonna be good from now on.
My little penguin, I am steroid refractory. They do nothing for me. Woohoo, I'm glad because they suck big time. Weight gain, spots, crazy lady syndrome. Ive enough to deal with. I'm also intolerant to 5asas.
08-22-2015, 08:03 PM   #7
my little penguin
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The steroids wouldn't be for crohns but to reduce the likelihood and severity of a reaction during the remicade infusion.
It's only given by iv during the infusions .
Ds reacted twice to remicade after 8 months
First time with just Benadryl and Zyrtec
Second time docs gave iv steroids and Benadryl /Zyrtec prior to the infusion and he still reacted
08-23-2015, 08:45 AM   #8
Clash
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I would ask about the steroids and an antibodies test between the infusions. My son had to come off Remicade for surgery. When he went back on (it was 12 weeks total he was off) he had a slight reaction to the second and then again to the third infusion (he had iv steroids each time for the reason mentioned above). They ran his antibodies and they were extremely high so we had to drop remicade for good, we were crushed.

We knew going in that there was the chance of creating antibodies after coming off Remicade but had really hoped that wasn't the case. It was hard on my son since it wasn't a compliancy issue but something required for surgery.

Good luck I hope the remicade still kicks butt for you!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
08-23-2015, 10:26 AM   #9
sickinlk
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Woah clash, I didn't realise you could build antibodies in such a short time. Its been 16 weeks since I had an infusion.
Ive have been getting an antihistamine plus a shot of steroids with every infusion since the beginning. Standard protocol here in told.
08-23-2015, 10:33 AM   #10
sickinlk
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My little penguin. I'm staying positive I wont react. Watch this space. Lol.
I wont plan anything for after just in case.
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