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Ulcerative Colitis
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Posted 10/9/2013 3:19 PM (GMT 0)
I have had uc since 2006 and have mostly been in remission on azathioprine and colozal and canasa.
I was also greatly helped by lexapro.
Due to a recent flare involving incontinence and bloody D my GI has added Apriso (asacol)
and put me on Uceris. After a week on Uceris I have improved and will continue for several
more weeks on it. In order to get me off Uceris my GI is suggesting I go on Simponi--for a year.
It is a new drug and I am wary of its side effects. I wonder if anyone has any personal
experience yet of this drug--I know approval is recent for uc. And if anyone has any other suggestions.
Posted 10/9/2013 3:43 PM (GMT 0)
Can't help you on the Simponi but I was just curious if you had any idea why you slipped out of remission. I think the doctors are all wrong on the Uceris dosing. They only prescribe it for 8 weeks, which seems ridiculous to me. It is a non-systemic steroid so it does not have the side effects that prednisone has and yet they will keep you on prednisone for months and years. If I were your doctor I would keep you on the Apriso forever and after 8 weeks of Uceris I would have you continue on the Uceris two days per week, probably forever also. To me that is a lot safer than going on these biologics like Simponi. You should at least ask your doctor about continuing with the Uceris two days per week and see what he says, even though he will probably say no.
Posted 10/9/2013 7:39 PM (GMT 0)
I believe I slip out of remission due to stress. I see you are on many "natural" things.
I also take the Vit D and the folic acid. I did not know the VSL#3 came in a pill form.
Will look up Lialda and Levsin. Thanks for your reply.
Posted 10/9/2013 7:59 PM (GMT 0)
VSL regular strength comes in a capsule. To me it is easier to avoid mixing and taste issues and is much easier to dose rather than taking 1/4 and 1/2 packets. The capsules do not need a prescription and are never covered by insurance whereas the double strength packets are sometimes covered by insurance and must have a prescription. I hope you ask the doctor about continuing on Uceris (if working) two times a week as I would love to hear what he says. I don't think anyone I have heard of has ever asked.
Posted 10/10/2013 3:14 AM (GMT 0)
Typically the first biological that they will give you is Remicade, it is more effective than Simponi according to the clinical data; I would start with that first and it has been around for a long time with lots of trials to support it. Did the GI say why they wanted to start you on Simponi first and then only for a year? once you stop a biological then you normally can't start it back up again due to antibodies developing in your body if you stop.

I used Simponi for a few months, I have not complaints about it but I stopped it because I decided that I want to go for surgery instead. It never really got me into remission but I only used it for a few months. Remicade was great for me for almost 5 years.
Posted 10/10/2013 1:43 PM (GMT 0)
I don't know why my GI wants to start me on Simponi and I will find out--I assumed it was because it is newer and GI thinks it may be better than Remicade. You say Remicade was great for five years--then I assume it stopped working. Did you have any side effects? Thanks so much.
Posted 10/11/2013 2:05 PM (GMT 0)
I ended up building anti-bodies to Remicade which is to be expected over time.

I've tried Humira which did not work at all for me and then Simponi for a few months but then I decided to stop and I have scheduled surgery instead....I'm just done with UC, I don't want to deal with it anymore.

Simponi was much better for me than Humira but Remicade was definitely the best.
Posted 10/22/2013 2:58 AM (GMT 0)
My understanding is that the only biologic that you build antibodies to and that you can't take again is Remicade due to the mouse proteins in it. Also, I have been told that your first biologic is typically your best. I started with Humira (1 yr), then Remicade (had a reaction at the beginning of 1st dose and had to stop), now trying Simponi (had loading dose, but doesn't seem to be doing anything for me; might need more time). Humira so far was the best but it started to wain. Looking forward to Vedolizaumab, that one sounds promising.

Simponi syringe isn't painful like Humira; just daunting to do at first.
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