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Just got my first Simponi shot... HELP!

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Ulcerative Colitis
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Posted 4/17/2015 1:21 AM (GMT 0)
Hello,

Just started treatment with Simponi today after not responding well to my previous treatment. I want to ask for advice and also hear some of your stories since I want to be more involved with my condition.

I was diagnosed with Ulcerative Colitis in 2003 when I was 18 so I have some time with the condition. I was practically in remission taking no medicine for about 8 years before things started to get painful. I have been in the worst flare up for about 5 months now and after becoming prednisone dependant , my doctor decided to prescribe Simponi.

I want to know how good or how bad Simponi is? I know everyone reacts differently but its good to know what I should be expecting.

Thank you
Posted 4/17/2015 1:39 AM (GMT 0)
i've been on simponi since dec 2013. besides my last few sucky months, i was living a normal life- working, going out, not constantly thinking about UC. went on vacation over the summer for the first time since 2009. i did not realize how used i had gotten to feeling like crap all the time.

i'd say you have nothing to lose by seeing if it helps. my main side effect that has been tough on me is neutropenia. i'm not allowed to leave my house because my wbc is very low. i had to take prednisone last month to boost it. i got blood work again today so i am hoping it's not low anymore. i would honestly cry if i had to stop simponi but i really hate wearing a mask just to take a walk or go to the doctor's. entyvio would be my next and last drug to try before surgery.
Posted 4/17/2015 2:01 AM (GMT 0)
it is an interesting choice. usually Remicade or Humira is chosen 1st.

anyway, good luck. all of these biologics have less than 50% remission rate, although quite a few others get improvement.

what treatment did not work?
Posted 4/17/2015 3:18 AM (GMT 0)
Good luck with it. I tried simponi first as well. I figured, it's easier than remicade and the shots are less painful than Humira. I expected great results, but in my case, I didn't get any. I hope it works well for you. It is a great option, the shots are easy, and you can administer them at home, it's not too frequent... I wish it had worked for me.
Posted 4/17/2015 3:19 PM (GMT 0)
Only way to know is try simponi, give it a few months to work. 60+ percent of people have a response to anti-tnf, biologic treatments, that is an improvement in their uc symptoms. 34-36 percent receive remission within a year (more might after that year threshold but that's they maximum time for most clinical studies).

I was prednisone-dependent prior to remicade, now I'm in remission with 1, non-urgent, formed bm a day. This is the only uc drug to give me remission.
Posted 4/17/2015 3:29 PM (GMT 0)
I see not to many people who respond well to Simponi. Hope it does it for me.

I was on 15 mg prednisone, Asacol HD 1600 mg and 5 Folic Acid 400mcg tablets per day.
I started noticing that if I lower the prednisone dosage like my doctor had advised, I became very tired during the day and got fevers out of no where. When I go to the bathroom it is very painfull to the point I feel im gonna pass out. There is almost always blood and mucus and the urgency has gotten worse.

Crossing my fingers that Simponi works.

Even though I have all this uncomfortable symptoms, I haven't stopped living my life.
What do you guys think about diet?? It seems like it does not affect me at all. I can even say that the times I drink alcohol it actually makes me feel better the next day. But then again that might just be me justifying my poor decisions. confused

Post Edited (jonquis) : 4/17/2015 9:32:54 AM (GMT-6)

Posted 4/17/2015 3:37 PM (GMT 0)
jonquis, what you describe sounds normal for UC. It's very difficult to taper off prednisone and keep symptoms managed. That's where simponi comes in. If it gets you headed in the right direction, you should see your symptoms start to improve and even as you taper off the steroids, you should feel pretty good. As iPoop said, he is going once daily, many people have that result. I don't see a lot of people using simponi here to be honest. Most people start with Remicade and if it works, they stay with it. I hope you have good results with Simponi, like people have said, 50 or 60% of people have great luck so chance is on your side :)

Oh and for me, diet isn't going to give me any major changes in my condition. If i don't eat at all, I feel a little better but not GREAT. If I don't eat gassy foods, I am less gassy and that's great but that's the same regardless of UC.
Posted 4/17/2015 3:45 PM (GMT 0)
Diet modification has done absolutely nothing for me either. Some swear by it. Uc is a very individual disease, when it comes to finding the right treatment option.

Simponi isn't as common as remicade or humira are on this forum. Simponi is newer, not really sure why else it isn't prescribed as often other than that.
Posted 4/17/2015 3:54 PM (GMT 0)
Thanks Ipoop and notsosicklygirl.

I think Simponi is gonna do it for me, I am really optimistic. I have also noticed that my symptoms are not as severe as others that started using Simponi and got good results, so i have that going for me as well.

What do you think about alcohol consumption??? Im male 29 and and I like to have drinks on the weekend, should I be worrying about how it might react with Simponi??
Posted 4/17/2015 5:01 PM (GMT 0)
Alcohol doesn't effect my uc symptoms at all, when taken in moderation. For others, any alcohol and uc are define no, no's (really bad uc symptoms next day).

I've seen nothing about interactions between simponi/remicade/humira and alcohol consumption. So, enjoy the occasional drink and socialize. I usually have a beer on each of the weekend days, myself

Cheers,
Posted 4/17/2015 8:55 PM (GMT 0)
more than a glass or two of wine, and I often have some symptom uptick than next day or two. for me, the extra drinks are just not worth it.
Posted 4/18/2015 12:22 PM (GMT 0)
I started Simponi in October 2014, my first biologic. Gradual improvements, then proper remission after about six weeks. No side effects at all apart from some nausea. I still drink when I want as well (I'm 21 year old female). Good luck with it!
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