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Anyone been on Humira long term?? And question about fistulas

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Posted 4/23/2011 9:19 PM (GMT 0)
Just wondering if there is anyone out there that has been on Humira for a year or more?? What side affects have you had if any? Are you still on it and if not why??

I'ved searched old post and have read about many people being on it but I can't tell if those that posted a couple years back are still on it. smilewinkgrin

Just trying to read all I can about it and the side affects people are having from it before I go to my doctor on Monday and potentially start humira.

Anyone have fistula's healed by anything OTHER than a biologic, if so what??? Just want to know some options to bring up to my doc who only gave me the biologic option eyes

Posted 4/23/2011 10:33 PM (GMT 0)
I have been on Humira for a very long time, maybe three years or more now. I have had shingles once, which is posted as a SE. My immune system is down due to med which also causes me to get MRSA about 2-3 times a year. However, without the Humira my crohns would be alot worse. You have to out weigh the SE vs. the benefit. I have been worried about the risk of lymphoma. Unfortunately, I have been having a hard time lately and not able to eat hardly anything without having severe D and humira is not working.
Posted 4/24/2011 2:12 AM (GMT 0)
2 years for me. Have mollosum (a viral skin thing typically seen in children). I shaved a spot off and it became infected. This has been the only time in two years that I have been on antibiotics. I also get itchy spots on my scalp. My periods have been worse, with more cramping then in the past.

My fistula healed on Imuran (a few years before I started Humira).

I am still on Humira and am afraid to go off of it, I do not want my Crohn's symtoms to come back.

Posted 4/24/2011 2:44 AM (GMT 0)
Thanks for the replies. Hoping to hear from more long term users. This med just really scares me the more I read about it and the reactions people are having from it.

From MS to Lupus !!! Those don't go away when you stop the Humira does it??

Just something I can't imagine getting on top of crohn's. I feel soo sorry for those people :(
Posted 4/24/2011 4:40 AM (GMT 0)
I've been on Humira for almost 4 years with no major side effects. My immune system seems fine. I don't get sick more than anyone else does. In fact, maybe even less. Though, For awhile i was on a double dose And during that time had a few bad pap smears. The doc said it could be connected to the Humira so I went back down to one pen every2 wks and then everything was fine. But who knows what was really going on.
Posted 4/24/2011 5:17 AM (GMT 0)
I have been on Humira since 2007. It did help when I had my fisutla to get smaller but it got to bad before they switched me to every week by that point sadly there was no getting around my fistula without surgery even tried TPN at that point. Since that surgery though they tried me on bi-weekly but it wasnt enough so I take it weekly and no fistulas since
Posted 4/24/2011 3:28 PM (GMT 0)
Thanks Bloated and Dragonfly. Dragonfly have you had any side effects??
Posted 4/24/2011 5:51 PM (GMT 0)
I've been on it for over 2 years. So far my only side effect has been remission. When people get MS or Lupus like symptoms they sometimes go away when you stop the drug and sometimes they don't.
Posted 4/26/2011 1:12 AM (GMT 0)
I've been on for about 2 years. I haven't had any bad side effects from it, but to be honest, it hasn't helped my Crohn's symptoms much either. My doctor says my inflammation markers are down when I'm on it, and my fistula and abscesses have gone away while on it, so presumably it is working better than nothing. :)

Interestingly, like bloated mentioned, I actually feel like I get sick a lot less now that I'm on it. That's probably because I'm a lot more careful about hand washing now, but it's good news regardless. :)
Posted 4/26/2011 4:50 PM (GMT 0)
I've been on it on and off for about 3 years.  I actually used to get sick all of the time (upper respiratory infections every month or so), but since I've been on prednisone for 2.5 yrs straight, that has gone away.  It keeps my Crohns in remission but doesn't help with the Crohn's related arthritis any more.  My drs say they can't get it approved more than once every 2 weeks, but so many people on here get it more often, so I don't know what's up with my drs.  I've also switched back and forth from Cimzia a couple of times, but Humira seems to help more with my stomach pain. 

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