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Ulcerative Colitis
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Posted 1/22/2014 9:24 PM (GMT 0)
I am now 6 weeks into my Simponi treatments and SUCCESS!! I am in remission and have no colitis symptoms at all. Before starting Simponi I was on Prednisone and Uceris and still having problems. I am now off both and only taking Lialda and VSL. I feel good and I am starting to get back my energy. I am worried about the side effects (suppressed immune system and increased risk of cancer), but it became a quality of life issue for me.

Vicki
Posted 1/22/2014 9:30 PM (GMT 0)
Glad to hear of another Simponi success! Did you do the 2 initial doses, then 1 at 2 weeks and another after 4 more weeks? Simponi initially helped my quality of life (I didn't get a full remission though) and I didn't get cancer or any immune complications I am aware of, but like the other biologics seems to be having diminishing returns after about 6 months. I can't take Lialda or the like so maybe keeping that maintenance up will keep you in remission.
Posted 1/22/2014 9:52 PM (GMT 0)
Good to hear. Start my loading dose tomorrow. Looking forward to feeling better!!!!
Posted 1/22/2014 10:28 PM (GMT 0)
Good for you!
Posted 1/22/2014 10:33 PM (GMT 0)
Yes, I started with the 2 injections on one day and then 1 more at 2 weeks then will do the next tomorrow - which will be 1 month after the last and will be monthly after this. I started feeling better after a few days. Neekap - how long did you take the Simponi? I sure hope this lasts! It is so easy to forget that you have a serious illness when it is in remission.
Posted 1/23/2014 12:43 AM (GMT 0)
that's wonderful. :)
Posted 1/23/2014 1:37 AM (GMT 0)
Still taking Simponi, though I will regroup with GI tomorrow. I'm supposed to take my 7th dose on Friday so we will see. As long as I have been on it I haven't been in the hospital and I've been fairly functional, but far from remission, so its been bittersweet.
Posted 1/23/2014 3:08 AM (GMT 0)
neekap -it sounds to me like your symptoms were/are much worse than mine (although when sick - I am sure I thought mine were the worst EVER!). I have never been in the hospital, but close. Up until this last flare the meds have held things in check or simply adding the Pred did the trick. The last flare - nothing worked so I gave into the imunosuppressants which I had resisted in the past.
Posted 3/16/2014 2:27 PM (GMT 0)
Hi!
Vicki, wondering how y're doing on the Simponi? I hope it's still going well, my daughter is beginning tomorrow.
Thanks

Post Edited (rey) : 3/16/2014 8:33:18 AM (GMT-6)

Posted 3/16/2014 4:10 PM (GMT 0)
Congrats!

I just took my second loading dose a few days ago and I am at about 90%...very pleased as well, actually sat on the couch yesterday and waited an hour till the movie ended before I pooped..when was the last time any of us did THAT?!?
Posted 3/18/2014 2:47 PM (GMT 0)
I am doing GREAT!!!!!! All of my UC symptoms are gone, I am in total remission. An added bonus is that my symptoms of Auto Immune Hepatitis are gone as well, all my liver function tests are in the normal range. I feel good, look better than I did and my energy level is returning to normal. I have been on Simponi since the latter part of December. It all seems too good to be true, I keep waiting for the other shoe to drop. I am trying to enjoy it and take one day at a time.
Posted 3/18/2014 2:50 PM (GMT 0)
I forgot to mention, I have even stopped taking Lialda. So the only meds taking for UC are the VSL#3 and the Simponi!
Posted 3/18/2014 3:40 PM (GMT 0)
That's great news Vicki!
I had my loading dose on Feb 7th, will have my 4th injection Friday, have not noticed great improvement, but a tiny bit better. Anyone know how long you try this before knowing it is not going to work?
Posted 3/18/2014 4:00 PM (GMT 0)
I think I remember someone telling me it could take up to 3 months. I think you are going to have to give it some more time to really tell. Fingers crossed for you!
Posted 3/18/2014 4:42 PM (GMT 0)
vicki, that's neat about your liver numbers. mine are elevated since i started! i'm not sure what i'm gonna have to do.
Posted 3/18/2014 7:44 PM (GMT 0)
Good to hear, loading dose yesterday and things a bit quieter today.
Thanks
Posted 3/18/2014 8:49 PM (GMT 0)
Good to hear!

Don't be upset if it's quiet, then bad, then quiet, that's how it worked for me.

Eventually the quiet times got longer and longer (one hours, then a few, then half a day, then a string of days), then pretty soon the quiet times were dominant and the trouble times were the minor times during the day until they were almost nothing.
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