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After 12 years of UC, Starting Humira on Tuesday

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Ulcerative Colitis
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Posted 10/21/2012 2:37 PM (GMT 0)
Hi all,

I've lurked on the forum for years, but this is my first time posting.

Quick history:

I was diagnosed with moderate UC in 2000 and put on prednisone, as asacol & rowasa, which pretty quickly put it into remission for a few years. However, in 2005 I flared with a vengeance, losing about 60 lbs and developing severe arthritis to go with my already debilitating diarrhea. I had no health insurance then so I signed up for some UC trials which did not help at all. We discovered I had devolved a serious intolerance to mesalamine and went on sulfasalazine. That plus more prednisone kicked that flare, mostly.

Now things are starting to act up again. And while less of my colon is inflamed, the descending colon is really bad. My Dr said it's time to try a biologic. I did my research and agreed to try Humira since it was close to approval (here in the US) and seemed less scary (and less expensive) than remicade.

That brings us to today. I got my TB test to start humira and go in on Tuesday morning for my loading dose. I know there might not be a lot of UC'ers in the US who've tried humira yet, but I was hoping some of our Chrons brothers and sisters could comment on their experience. ie - if it helped, how quickly if it did, any side effects to look for, or anything else you think might be relevant.

Even after doing my own research and talking to my doc, I still am nervous. That might be exaggerated in my own head just because it's one of the "big biologic drugs" that I tried to avoid or so long.

Anyway, sorry for the long post. I look forward to any input available!
Posted 10/21/2012 5:53 PM (GMT 0)
Hello & welcome!

I hope you do well on Humira. Did your GI mention 6mp or Imuran? I was going to start a biologic but I ended up going on 6mp and I've been doing so much better. I was also doing well on mesalamine for a period of time but it seemed to stop working almost completely after a year or two. At that point, I ended up on prednisone, which was horrible for me because of the side effects. After months of trying to taper off I had to decide between Remicade and 6mp. I went with 6mp.

I have seen quite a few people who have used Humira here to achieve remission from their UC. Many tried Remicade first but not everyone. The thing that concerns me about Humira and Remicade is that I feel like I see a lot of people get a few years of relief and then symptoms show up again.. Did you ask your doctor what the plan would be if Humira stopped working for you?
Posted 10/21/2012 6:05 PM (GMT 0)
I did try a 6mp for a year or so. I didn't see much progress. I'm devolving a list of questions to take in, so I'll add that to my list (what if humira doesn't work, or stops working).

Thanks for your reply!
Posted 10/21/2012 6:22 PM (GMT 0)
Humira worked pretty good for me. I would not consider myself in remission but it's worked better than Remicade. I had minimal side effects, just a fever/flu like symptoms the day after the injection. You do have to be careful of infections while on Humira. If you develop a cough, sore throat, runny nose, etc, it's better to be safe than sorry and get it checked out by your doc. I ignored a cough and it turned into severe pneumonia. I've been off Humira since the end of August to aid my recovery. My pulmonologist and GI will determine when I am able to start it again....hopefully soon!

Good Luck!
Posted 10/21/2012 6:28 PM (GMT 0)
Hi,

I am usually floating round the Crohn's and ostomy boards but I saw your post and wanted to tell you about my experience with Humira. I started on Humira after using Imuran for 8 months with no change. I started Humira in June and by my colonoscopy in July there was no sign of inflammation. Unfortunately I suffered a rupture in my colon August 15 and had to have emergency surgery and now have an ostomy.

I have elected to go back on Humira to stop my Crohn's from spreading to other areas. I will start back on Humira mid November after our trip to Europe.

Good luck, it's not that bad and I didn't have any side effects at all. The self injectors aren't that bad and it's only 10 seconds of your life!

Good luck.

Kelly
Posted 10/21/2012 7:27 PM (GMT 0)
I'm on Humira. Not in complete remission. Much better then without it. Day of injection I gt a headache and sometimes a sore throat. Only lasts for a day or two. Can't seem to get rid of the rectal inflammation . Goes away and then reappears. Working on it. Still taking oral and rectal meds.
I feel much better the first week I give the shot. Going to ask my GI if I can take it every 10 days instead of 14 days.

Hope you have good luck taking Humira ! Hope you don't have many side effects.
Posted 10/21/2012 9:55 PM (GMT 0)
Humira was just approved in the US last month. I'm waiting for preauthorization from my insurance :-)
Posted 10/21/2012 10:29 PM (GMT 0)

xeekk said...
Humira was just approved in the US last month. I'm waiting for preauthorization from my insurance :-)

Xeekk, I wish you the best with it! I also wish you the best dealing with insurance. I've been fortunate enough to have a dr who has taken care of everything and my insurance hasn't given me trouble at all.

Make sure to sign up for the "Humira Protection Plan." It is paying for more than half of my copay.
Posted 1/22/2013 9:51 PM (GMT 0)
I just wanted to thank y'all for the responses and followup. Sorry I've been absent (Is there any good mobile solution for these forums? I find myself at a computer so little these days, but on my phone constantly!)

Anyway, humira has been going well. The changes have been slow so it's a little harder to gauge but my BM frequency has gone from 7-10 a day to 4-5. No bleeding (see the tiniest drop every once in a while). Pain is significantly less. Urgency and some incontenence are the biggest remaining symptoms (My scope 7/12 showed most of the inflammation on the left side vs whole colon when diagnosed, which is great except why did it have to be the left side?? Lol).

We upped my dose from 1 pen every other week to every week. The humira protection plan has been great. That plus my insurance and I'm paying $5 a month right now.

Also, saw the doc the other day and got the okay to start tapering off sulfasalazine to increase the chances I can get my wife knocked up ;). We've been trying for about a year but knew the sulfa has an affect on sperm, so this is a big deal for us. Fingers crossed I don't see symptoms recur.

Anyway things are going well and I hope everyone who responded are doing equally well!
Posted 1/23/2013 12:21 AM (GMT 0)
Good luck! Think positive
Posted 1/23/2013 1:48 AM (GMT 0)
That's great that you're feeling so much better. Hopefully the progress continues until you don't have any inflammation at all. One of the tough parts about this illness is that healing is a process, though you're not 100%, you have seen quite a bit of improvement and that's great! As for your wife, best of luck!!

I use this site through the browser on my cell phone sometimes. I have thought it would be nice to have an app but I don't think one exists.
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