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simponi update

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Ulcerative Colitis
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Posted 10/21/2013 1:21 PM (GMT 0)
I had my two loading doses of Simponi on Friday. I'm using the Auto Injector. I will get a second dose in two weeks and then every four weeks after that.

Within 24 hours, the bleeding seemed to ease a lot. I felt like I had a little more energy (that could be placebo effect.) Less frequency and urgency too. Much less pain too. However, day 3 and I still have D and mucus. No formed stools. The gas last night was increased and I seem to be having more frequency in the middle of the night than during the day. Hoping to continue seeing improvement over the next few days.

Posted 10/21/2013 7:18 PM (GMT 0)
I had increased gas as I started to heal with Simponi and then bloating in my stomach area started to decrease.

Have you thought about adding a steroid to help with your healing and the Simponi? Either a steroid enema or pill; something temporary until the Simponi kicks in fully.
Posted 10/21/2013 8:07 PM (GMT 0)
Are you in a trial?
Posted 10/22/2013 10:06 AM (GMT 0)

Madcat25 said...
Are you in a trial?

No, the FDA approved Simponi a few months ago for treating UC.
Posted 10/22/2013 1:39 PM (GMT 0)
I was on steriods for five weeks and they didn't work. So I hadn't thought of introducing them again. I really don't want to - the side effects are almost as miserable as the UC.

DAY 4
Last night I was up less. Gas was a bit less - not painful just weird - I can hear it rumbling in my colon. On waking, had mucus and D. But I had formed stools later this am with no blood! That hasn't happened in months. Still have some urgency and feeling like I have to go. Of course, I'm afraid to pass gas off the toilet so that doesn't help!
Posted 10/22/2013 1:56 PM (GMT 0)
Hopefully this will be the first step in remission for you. No blood and formed stools is a very good sign. I'm hoping I get my Simponi soon. I just switched jobs and my new insurance company is a major pain. I've been fighting with them for 2 weeks to approve the medicine!
Posted 10/23/2013 8:32 PM (GMT 0)
I have been on Simponi for 2 weeks now (third injection was Monday). I haven't really seen a big difference yet, have you change your diet or did anything different since you started some Simponi Scrappiest?
Posted 10/23/2013 8:45 PM (GMT 0)
Simponi definitely worked better for me than Humira but not as good as Remicade... That's why I suggested maybe asking about some steroids with it to start things off until the simponi fully kicks in.
Posted 10/24/2013 6:00 PM (GMT 0)
No diet changes except maybe I'm eating more than I was before now that my stomach isn't so upset. I generally avoid caffeine and dairy. I eat gluten (did gluten free for 3 months with no changes) and I haven't been eating any raw veggies for awhile. Limited even on cooked ones. My diet consists of mostly carbs and protein (chicken, eggs, etc.) So a low residue diet at any rate.

And an update. Stools are very soft but formed. Should probably work on firming those up somehow? No blood. Gassy with a little pain from that in the morning. Urgency is less. Did not get up once in the night last night. Overall I feel better. Less ill.
Posted 10/25/2013 12:58 AM (GMT 0)
That's awesome. I'll be glad when I can say no blood. And sleeping the entire night that would be wonderful! I was in remission on Apriso only for years before it came back ( August 2013) and I forgot how miserable you become. I hoping to wake up one day and Simponi have kicked in. Everything send me to the bathroom so I don't know what to eat or not to eat. I think the only that they Simponi has done so far is helping me not go for a longer period of time. I can go about 6-7 hours without going to the bathroom, but when I go OMG.
Posted 10/28/2013 12:36 PM (GMT 0)
well the weekend brought not so great results. back to bloody d, going 15+ times a day and horrible urgency. calling the doctor today. maybe i need to try prenisone in combination just to get to the maintenance phase. i'm so bummed.
Posted 10/28/2013 1:33 PM (GMT 0)
That's what I had to do (Predisone), my GI did not want to up the dosage of Simponi because there wasn't much clinical information on higher dosages of Simponi, unlike Humira (he was very aggressive with Humira dosages).

I was also planning on going for surgery this Fall at the time that I started Simponi so he didn't want to get too aggressive with my treatments, so I only tried Simponi for about 2 months before I stopped.
Posted 10/31/2013 2:37 PM (GMT 0)
things seem to be improving and i get to take another shot tomorrow.
no more bleeding and a little less frequency. d is still a problem, but sometimes things are a little more formed. still have some urgency.
talked to doc - holding off on pred until we give the simponi a little more time.
Posted 10/31/2013 2:42 PM (GMT 0)
Scrappiest,
I strongly urge you try Uceris instead of pred as a steroid, fewer side effects and it has been effective for me for the last four weeks. It took about a week to kick in. Very formed bm's and less blood.
Posted 10/31/2013 3:10 PM (GMT 0)
Is the Uceris a steroids? I have been on prednisone since April. I get down to 20mg and the cramping is horrible. Last week I got down to 10mg. I was able to use it for 4 days before the cramping started again but much worse then before. GI put me back up to 30mg. I know I can't stay on it forever but I haven't had any side effect from using it. So I am not pushing to try something else.
Posted 10/31/2013 6:07 PM (GMT 0)
Yes, Uceris is a steroid, but a newer one, that from what I've read on this forum, is less bad than
prednisone. It might be worth trying.
Posted 10/31/2013 7:37 PM (GMT 0)
Thanks for sharing your results. I hope you are dramatically better after your next dose.
Posted 10/31/2013 10:12 PM (GMT 0)

mycupoftea said...
Scrappiest,
I strongly urge you try Uceris instead of pred as a steroid, fewer side effects and it has been effective for me for the last four weeks. It took about a week to kick in. Very formed bm's and less blood.

Did your insurance force a letter from your GI before approving ?
Posted 10/31/2013 10:21 PM (GMT 0)
No, insurance paid well for 8 weeks, will need a letter if I want to continue another 8 weeks.
Posted 12/5/2013 11:45 AM (GMT 0)
8 weeks last loading dose. Doing pretty good. Formed soft stools. Some urgency some gas. Starting to reintroduce foods slowly. Let's hope it keeps working.
Posted 12/5/2013 8:00 PM (GMT 0)
I have been on Uceris for about 9 weeks while tapering off Pred, there has been some improvement, but not enough. My doc did have to write to get insurance approvals but they finally paid.

I am now getting ready to start Simponi after approvals were received from the insurance company. I am totally blown away to know that my insurance company is paying over $8,000 for the first month of injections! I sure hope this works....
Posted 12/12/2013 7:26 PM (GMT 0)
scrappiest, are you still doing well?? i REALLY hope you are seeing improvement.
Posted 11/15/2014 9:36 PM (GMT 0)
It's been one year and I am living a normal life. I do have a little stomach upset a few mornings before I get the shot. But rarely do I even have soft stool. I'm looking forward to my colonoscopy. Hoping that I'm healing a little.
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