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Ulcerative Colitis
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Posted 7/27/2015 4:22 AM (GMT 0)
Anyone else on Simponi? I swear I love this drug but the one thing I don't love is that it seems to wear off around the third week. I've heard this is not unheard of with RA patients, but I'm just wondering if anyone else had this with their UC and how their docs handled it. Mine just put me on Imuran too to pick up the slack, but has anyone had any other solutions? Different dosing, etc.?
Posted 7/27/2015 4:33 AM (GMT 0)
I have not noticed any wearing off but I'm on a crap ton of meds and supplements so they probably pick up the slack! I've been late on my shot quite a few times and can feel a little off when I go 5-6 weeks instead of the usual 4 weeks.
Posted 7/28/2015 1:59 PM (GMT 0)
I am on Simponi but haven't been on that long.  I feel the same as you about the last week I can't wait to take my next shot and sometimes want to take it early.   I keep hoping the longer I am on it that will go away?

I have a doctor's appt in August and going to ask if there is any increased dosing options like Humira.

But I do love it.  It got me out of a serious flare and off steroids.  Just hope it lasts!

Posted 7/31/2015 3:33 AM (GMT 0)
I have no problem with the Simponi wearing off. Been in remission for about 8 months now. Think I started the same time as bananagirl. Stopped taking balsalazide about 8 weeks ago. See no difference without out it.
Haven't posted in a while. Been feeling pretty good. Little IBS here and there. Had some hemmies lasered. Made a big difference .

Faith
Posted 12/11/2015 4:22 AM (GMT 0)
Hi again all! It's great to hear how well this works! I had a snag with my latest delivery so looks like I'll be taking my next injection a few days late. Bananagirl, have you noticed any effects from taking it late? Or anyone else that's taken it late?
Posted 12/11/2015 6:15 AM (GMT 0)
Nope I don't notice anything. My last two shots were late (3.5 weeks and then 1 week). I felt great the whole time it wasn't in my system.

I don't think you can build up antibodies too quickly if you are a little late so I wouldn't worry.
Posted 12/11/2015 8:11 AM (GMT 0)
I haven't had any problems with Simponi but I take it every 4 weeks to the day and even to the hour. I stab myself while I watch the 5:00 p.m. news and I see some irony in that.
Posted 12/11/2015 3:06 PM (GMT 0)
I usually do too Virgil! This time there was something screwy with the injector (I literally have the worst luck). This is the second time I've had an injector issue. The first was because it had been packed so all the ice packs shifted away from the wrapped box and then was left in 90 heat for 13 hours. By the time I got it it was about 70 in that box and the shot was nowhere near cold. Not even a little. The company was pretty good about it and was able to send me out a new one in time for my dose.This time there was something wrong with the injector itself. Jannssen said they will get me a replacement but I have to wait for my insurance to process some paperwork for them to approve sending me a new one. So frustrating.

I'm worried about antibodies. I had tried remicade but got really sick and had to delay my second or third infusion and had a nasty reaction when I went back. I love the Simponi and am so worried I won't be able to take it anymore!
Posted 12/24/2015 7:56 PM (GMT 0)
I have been taking Simponi now for 21 months, and yes, I notice towards the end of the 4 weeks I get a little sketchy in my stomach about 5 days before it's due. And I love it as well...saved my life.

Nothing serious but it get's a little "off". Maybe going a few times a day instead of once, nothing much else...but I do notice a slight difference. It was a lifesaver for me, put me into remission for the first time in 15 years at least, go once every day or two (who can say that!). On nothing else but Lialda.

I'm a volunteer counselor at Camp Oasis (Crohns and Colitis Foundation of America) once a year and I spoke to a lot of counselors and they all pretty much said the exact same thing. A few days before their infusions or injections of TNF blockers their stomachs were a bit "off", so it's perfectly normal.
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