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pb4- How are you doing on Humira?

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Ulcerative Colitis
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Posted 4/10/2014 1:47 PM (GMT 0)
I know you could not take 6mp/imuran and started Humira recently with out 6mp. Wondering how is it working for you?
Posted 4/10/2014 4:42 PM (GMT 0)
Hello, I have been on Humira for 16 weeks now. Just recently was put on an increased dosage of weekly injections. To be honest, I have seen zero improvement in symptoms. If anything the humira increased the urgency and diarrhea and have been experiencing an ongoing fever ranging from 99-102 deg F. I am looking to get off this medication asap and look into another treatment. I am a 23 year old boy who managed to finish school after leaving numerous semesters from being too sick to attend. Currently still going 13-15+ times daily often with uncomfortable cramping. I hope it works better for you but it just prolonged my flare if not made it worse.

diagnosed with ulcerative colitis in 2009.
Posted 4/10/2014 5:29 PM (GMT 0)
Hi Pam, thanks for asking!

Honestly I haven't found it to help much (IMO) as far as frequency and urgency, I still go anywhere from 4 to 10 times a day, it's still so sporadic it still drives me insane. I definitely notice improvement with the rectovaginal fistula though, no more gas at all passing through the vagina (just before I started Humira I noticed that it seemed to be getting better though I'm sure it wasn't likely healing on it's own or anything, just though it was weird). I tend to have many days where it's a round 6-7 times of "going" and to me that's definitely no remission.

I'm giving myself a shot once every 2 weeks as RX by my GI, I see him at the end of May to update him on how things have been going (I hate keeping poop journals lol). I started my first loading doses (4) on February 12, I thought by now I would be in better shape frequency and urgency wise but I'm not...do you suppose it should have kicked in by now? I honestly don't know what to expect or even think at this point.

Also, one other improvement I noted is my bowels tend to behave somewhat better around my menstrual cycle which is nice because I'm not having near as painful or as many BM's as I usually do during that time but I just wish I could be normal again. Generally during my cycle, my frequency used to increase quite a bit more so I'm glad that's improved but I don't get why I'm not doing better than what I am.

If you or anyone else has any insight I would love to hear it.
Posted 4/10/2014 5:49 PM (GMT 0)
Thanks pb4.  I am not on any biologics so can not help much but that would be my next step so trying to get as much information as possible. Seems like it did help your fistula. My GI says 6mp/imuran together with biologics work better but as I understand you can not take 6mp. Right?

I will give some time since you were not on any medication for long time.Good luck and hope it starts working soon.

Posted 4/10/2014 8:50 PM (GMT 0)
Yeah, I was unresponsive to them, they did nothing for me at all....he's going to check my fistula situation when I see him next month...I suppose that since I have a lot of deep inflammation in the rectum (noted in last scope I had in January) that it may take longer for the healing, I hope that's the reason why I haven't reached a wonderful remission yet, but with my luck...

Thanks for the well wishes, I hope you find relief very soon as well, IBD is a battle for sure!
Posted 4/10/2014 9:37 PM (GMT 0)
do you know if your GI plans to keep- you on Humira just to help with the fistula, or is he hoping it will help with UC too? That's too bad, that you haven't noticed much of a difference... I can't say I have either, truthfully! I believe the Humira has helped somewhat, but I still go a lot, say 6-10x a day, with urgency. And blood. So it certainly is nowhere near remission! My surgery is Monday.... shakehead . Now THIS better clear up both the UC and the RV fistula! I do think if you were to find relief from UC with Humira, you would have by now.  PS- on a funny note, I spoke with my beloved GI today, just to touch base before surgery- he reiterated that it was the right thing to do, calmed me down, etc. And he says to me "I'll be there on Tuesday with the champagne & lobster!"... I told him to bring a blender too to mix it up! Actually made me laugh, which has been tough to do lately!
Posted 4/11/2014 12:57 AM (GMT 0)
Hey Eva,

I'm not 100% sure what his plans are but I know he expected it would not only help my fistula but my crohn's colitis as well (mom had UC, I have CD lol) I would imagine if it starts giving me some noticeable improvements at all with my symptoms he's likely going to want me to stay on it even if/when the fistula heals completely...that would be my guess but I don't know for sure. For all I know, he may even up my dose to one shot a week rather than every 2 weeks to see if it puts me in full remission...

He did say that if we can't get the inflammation under control that I'd be facing an ostomy (I told him that wasn't an option) so he probably will keep me on it.

LOL, it's nice to have a GI with a personality eh...this is my 4th GI in 23 years, so far I like him the best GI wise and person wise as well.
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