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is humira worth taking if it doesn't work well?

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Posted 12/24/2013 10:35 PM (GMT 0)
i've been on humira for about 6 months i i dont feel much improvement. the last time i went to my doc she said i might have to up the doseage to an injection once a week(curently i do everyother week). she put me on entocort and i've had no improvment after 3 weeks so i dont think it's gona do anything. i just feel like is the risk of the side effects worth it if it doesn't do much? i'm starting to run out of options but i'm not seeing the gain of takeing something that barly works and wont put me in remisssion. i've never reached remmission yet since DX three years ago. i'm getting by but don't feel good at all, i still have weid nausous feeing in my stomach, and a painful bloated feeling in my side. i dont get it, i cant seem to find the right drugs, diet or anything. all replies are welcome :)
Posted 12/25/2013 12:11 AM (GMT 0)
That sucks :-/

It's possible the Humira might be doing something useful at the microscopic level, but that's not much consolation if you are still having symptoms. However, I would still try upping the dose. If that doesn't help, then I think you should have some tests to see what's going on inside.

Best of luck....
Posted 12/25/2013 2:51 AM (GMT 0)
As usual I agree with NiceCupOfTea, time to get some tests done again.

We are only about 5 months behind you in this. My kid has been on Remicade, & now Humira. We were told if Humira doesn't show relief we need to speak about surgery. I have told our GI I will need a second opinion/consult for that and am hoping Humira works. I like our GI, but I think I can't keep watching my kid lose weight and just retreat in her room all the time because she is so tired or tied to the bathroom. I would suggest you also look for more info from another doc who may have other solutions.
Posted 12/26/2013 7:52 PM (GMT 0)
thanks for the replies and suggestions, i guess i should get some tests done cus i havent had any scopes done in probably a year and a half. i have been doing the calprotectent test each month, a few months ago i was at 700 and two months later i was at 74 which is really good but that was when i was on steroids, i'm still waiting for the results of this month and i'm pretty sure it's probably pretty high. i've thought about changing Doctors but the doc i go to is the head doctor of childrens hospital in philadelphia and is supposed to be one of the best. plus i've had the same doc and i feel like she knows my history, it is a possability though cus i dont really like how she handles things. theres only so many options and i guess she can only do so much. i'm gonna start looking into some alternatives meds like LDN and some herbal natural healing. i haven't talked about surgery yet, it's probably my last option but for the mean time i'm gonna try everything i can befor i go that route. from what i read after surgery crohns can come back but if it would give me my life back for awhile i think i would do it, just not sure yet. hopefully the new year will come with healing and peace.
Posted 12/26/2013 9:07 PM (GMT 0)
I am with you Rango, I am avoiding surgery road for as long as possible. I have read the same things too about it coming back. the stats of 75% of crohn's patients have surgery is discouraging though. Trying to be the 25%. Hope you can be too.

My thought has been if they find a cure after you cut it out you can;t go back & get it put back in. But then quality of life has mostly been sucking so a reprise would be nice.
Posted 12/27/2013 8:48 PM (GMT 0)
Rango-totally struggling with the same thing now. Switched to Humira in June and double dose in Oct-recent scoping still showed severe inflammation in my lower colon. However, no antibodies as suspected so really weird. Wrestling with the idea of switching to something else or just accepting the level I'm at.
Posted 12/27/2013 10:26 PM (GMT 0)
i just think that humira isn't strong enogh to actually get me into remission, i guess my next step is uping the dose(which i dont think is gonna do anything), and if that doesn't work i'm done with humira. i'll probably try methotrexate. i gonna ask my doc about LDN but she probaly hasn't heard of it and can't give me a presription. i'm done with steroids, i think i'm just too used to them, i'm about to finish a 4 week taper of entocort and it did nothing + i'm sick of all the lousy side effects to. i'm actually starting to get tired of thinking about my crohns i wish i could just forget about it, wishful thinking i guess :-)
Posted 12/28/2013 2:21 AM (GMT 0)
Humira did nothing for me. I took it for two years and I have no idea why I wasted so much time. It's not a bad idea to up the dose and see if that helps, but I wouldn't do that for more than 3 months because you should be able to tell by then, if not sooner, whether it's working or not. Have you tried Cimzia? Cimzia helped me more than Humira. And then my GI put me on 6mp with the Cimzia and I achieved remission. It's hard on your body and the 6mp gave me bad side effects, but... It was the combination of the two drugs that really made a difference.

I was dx'd when I was 16 and I didn't find the right meds until I was about 20. So, hang in there. I know you get sick of being sick. You are at one of the best places to be seen. Childrens in Philly has a fantastic reputation. Even if your doc is awesome, Don't hesitate to make suggestions (like the LDN) You are your best advocate and it will be good for you to learn the ropes for someday when you "graduate" and they send you to an adult doc. Adult docs just don't care the way that ped docs do. I have found that most docs (not all) are willing to listen and consider educated suggestions. Keep your chin up!
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