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Who has been on Humira for 2+ years?

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Posted 4/2/2009 1:59 AM (GMT 0)
I've been on it just over 2 years now and we have reached a point where I'm having "breakthrough" issues. I have been on the bi weekly schedule but have done weekly during particularly stressful times. I saw my GI yesterday who said that there is something else we could try but he wants to milk Humira for all it's worth, since it worked so well for me, so we're going to weekly.

I'm wondering if it's similar to Remicade in that you often have to increase dose or frequency as time goes on - I guess because you're growing immune to it?

If you've been on it 2 or more years, have you had to increase your doses?

Posted 4/2/2009 2:33 AM (GMT 0)
I failed Humira, but my docs always told me that remission time with biologics doesn't seem to be long. They told me that being on Remicade for 2 1/2 years was amazing! So, they didn't expect me to remain on Humira for long either. Unfortunately, I had a severe reaction to it.

It was such a easy drug to use! I miss that part! GL and I hope they can keep you on Humira a while longer!
Posted 4/2/2009 2:44 AM (GMT 0)
My doc wants me to concider Humira-but I am a little worried about the biologics-what types of side effects do you exerience?
Posted 4/2/2009 2:48 AM (GMT 0)

Hi Aimee,

I've been on both Remicade & Humira.  Remicade I built antibodies too and have been on the Humira since fall of 2006.  I am a moderate to severe CD case so I've always been required to do the weekly shots.  Most likely because I am on the lowest dose of Imuran (my mainstay maintenance drug) because higher levels make me toxic.  I've read several ppl on here which have been on Humira for several years and are still in (so called) remission.  I have to believe it's based on each of our responses to our drug cocktails, absorbtion capacity, current activity levels of the CD along with stess & diet.  I don't think we can say, oh, it's "what I ate last night" (I know, bad example) or a number of other rational(s) we try to apply to a flare.  Some of the drugs take a long time to really work in the first place.  If you feel the bi-weekly shots are failing you and you are doing everything you know of to keep your CD as stable as possible you may want to talk with your Dr. about going to weekly doses.  Good Luck and I hope I've given you some insight.

Posted 4/2/2009 5:14 AM (GMT 0)
I've been on Humira for 9 months, and am still doing pretty well. Fatigue is my main thing right now. I also started the Specific Carbohydrate Diet 4 months ago, so hopefully that will help me milk Humira too. I hope the weekly shots work for you!
Posted 4/3/2009 2:36 PM (GMT 0)
I have been on Humira every other week for two years this month.  I have noticed in the last 6 months or so my symptoms present after about a week.  By the time I did my last injection, last night, I was really in belly pain, joint pain, and having a lot of gas and boating.  I will seen my GI on 4/23.  I had sever reactions to Remicade, so that is out.  I have also been on most of the other meds, prednisone, pentasa, 6MP, Imuran, Methotrexate, etc.  Since my last resection in 2006, things have just continued to go downhill for me.

I think the whole body pain (arthritis, fibro), the low grade fevers, and fatigue are the worst.

Susie

Posted 4/3/2009 5:54 PM (GMT 0)

MaggieLou said...
I have been on Humira every other week for two years this month.  I have noticed in the last 6 months or so my symptoms present after about a week.  By the time I did my last injection, last night, I was really in belly pain, joint pain, and having a lot of gas and boating.  I will seen my GI on 4/23.  I had sever reactions to Remicade, so that is out.  I have also been on most of the other meds, prednisone, pentasa, 6MP, Imuran, Methotrexate, etc.  Since my last resection in 2006, things have just continued to go downhill for me.

I think the whole body pain (arthritis, fibro), the low grade fevers, and fatigue are the worst.

Susie

We seem to be at the same place - I, too, cannot do Remicade again due to reaction (though it was fantastic for me 2.5 years). The joint pain and fatigue is killing me. I can handle some gas, bloating, pain, etc. I'll be interested to see what your GI decides is the next step.

Posted 4/7/2009 11:16 PM (GMT 0)
I am also in the same place- had a reaction to Remicade and just stopped the Humira 3 weeks ago. In addition to the incredible fatigue and body aches, I had numbness and tingling in my legs and gained 50 lbs.on the Humira. By about 6 weeks ago, it really did not seem to be working as well as it had been ,which was never really all that well. So my GI and I agreed itwas stupid to keep putting a drug into my bosy that was making me feel crappy most of the time and really wasn't helping. I have a colonoscopy tomorrow morning and we'll see if there is any inflammation. Don't know what would be next- I also hve tried all of the other drugs. Maybe Cimzia.....
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