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Simponi, 6 months...and in remission.

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Ulcerative Colitis
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Posted 10/28/2014 1:41 AM (GMT 0)
Hey everyone, been a while since I posted....hope you all are well.

Just wanted to stop by and say hi to all of you, and say that Simponi has put me into remission after 6 months. Took a bit longer than expected, but patience worked.

I am also on NO MORE Canasa! It apparently also works on proctitis as well, no more shoving anything up my butt before bedtime. I was on Canasa for the better part of 13 years, and no more. Only the shot once a month and Lialda of course....not a darn thing more, not even Imodium is needed.

No urgency, no frequency.... nothing. I go when I want to go, and that's sometimes only 1-2 times a day. In the last month I've has a few times when I didn't poop for 48 hours, swear to god. I was obsessed about it, and my wife was too busy laughing telling me that "it's what normal people do sometimes." When I did go, of course it was huge, but normal. I stared at it, so pretty......lol.

I may get a slight urge to go when driving, but it goes away instantly and I go whenever I get to wherever I was going...and that's if I even remember. No more anemia either, which they discovered months ago. My blood iron is back up to normal (was 25, should have been 60-165), and I feel fantastic...I was severely anemic for years and no one caught it.

So....hope all is well with all of you, and I will stop in from time to time to see what is cooking and interject just enough to be annoying!
Posted 10/28/2014 2:26 AM (GMT 0)
Hey Scott,

That's really good to hear!! I've been on simponi for about 11 weeks and things may be getting better. I Expected immediate results and when it didn't happen I was super bummed. I've read your past posts on simponi...

I'm still on 15 mg of pred and for the last 7 days been using hydrocortisone enemas. I'm going to try and not use the enema tonight, and hope things are still good tomorrow. I was having some formed stool before I started this short course of enemas but still quite a bit of blood. I think it was lower inflammation. The dr told me not to use the enemas but they completely cleared up the blood.

Anyways your post have inspired me and I hope I can have the same success with simponi. I tried posting about simponi but didn't get any positive feedback.

I stopped the Lialda due to terrible headaches and I don't think it was doing anything anyways, and now just taking the pred and 100mg of 6mp to help not build antibodies to the simponi.

Anyways thanks again for the hope!!
Posted 10/28/2014 3:07 AM (GMT 0)
I didn't give simponi that long and your post makes me feel like I should have been more patient. I am really happy you're doing so well!
Posted 10/28/2014 9:39 AM (GMT 0)
UCinsouthfl (and notsosicklygirl):

Don't give up....my dr kind of made me feel pressured because one of his pts responded immediately, so he thought I would as well. It took me 6 months as I said, and it was a slow process. I really felt better slowly every month, and I went downhill towards the end of every injection cycle...I could tell when it was getting close to when the 4 weeks was up. At the fifth month that time didn't come, and then by the sixth month, I felt just fine.

I "trust my stomach" which is the final step in remission after a good scope.

Here I am, needing my shot next Monday, and I feel like a million bucks....like I don't even need it, but we all know better. I think since it is fairly new to the UC crowd that there isn't enough of us to really have a good sample of people to judge on how long it takes to react yet maybe. Stay with it and see.....6 months would be a good point I would suppose to wait and see.

My most exciting thing was NO MORE CANASA!!!!!...it's systemic so it goes everywhere in your body and reaches that last part of your rectum that no medicine ever reached.....thank god!
Posted 10/28/2014 10:35 AM (GMT 0)
This is the best news ever!! I'm absolutely thrilled for you. I'm on a trial for Simponi right now but if I don't respond to treatment within a month they won't let me stay on it for maintenance... Reading your post has scared me about this! A month clearly isn't enough time :(
Posted 10/28/2014 10:47 AM (GMT 0)
Thanks for sharing, Scott. A few questions:

1) What dosage of lialda are you taking?
2) How much of your colon was inflamed prior to remissions?
Posted 10/28/2014 12:12 PM (GMT 0)
A month of Simponi isn't enough...you need to be on it a while and give it a chance. The loading dose itself takes a month, then you'd probably need at least a few months after that to see how it goes, depending on how involved your colon is.

I am taking 4.8g (4 tablets) of Lialda. My entire colon at it's worse when I started on it was totally involved medium to severe, and I had been on Uceris and it really didn't help much.
Posted 10/28/2014 12:50 PM (GMT 0)
That's awesome Scott Z. It always puts a smile on my face to read success stories here. Just stay the course, what you are doing is clearly working so don't change things around. Cheers to a long remission!
Posted 10/28/2014 2:04 PM (GMT 0)
Congrats Scott! Hope you have a long remission!
Posted 2/20/2015 3:18 PM (GMT 0)
Sorry to bump an old topic like this, but I've been searching this forum for a little bit this morning and came across your thread. I was just at my GI last night because my flare up came back after about two months. I'm currently on 4.8mg of Lialda and started taking 40mg of Prednisone back in December, and after getting down to 10mg of Prednisone two/three weeks ago, the flare up has started to rear it's ugly head again. My GI is suggesting either a combo of Uceris and Purinethol (he stated the Uceris would be used for only three months or so until the Purinethol kicks in), or Simponi. Quite frankly, Simponi is sounding like the better choice due to not having to take pills all the time and it's a once-a-month injection. The only thing that's bothering me is that the potential side effects are atrocious (although, I guess every medication has some sort of insane potential side effect). Even then, I've been reading some pretty positive things about Simponi and my GI has four patients who are currently on it and are responding well. He did throw out Remicade as well, but I'm not sure I'm up for sitting around for hours with an IV in my arm.

Now that it's been about four months since you posted this thread, do you have any updates for us? Is it still keeping you in remission?

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