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Why did you have to quit Humira?

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Crohn's Disease
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Posted 3/6/2011 5:09 PM (GMT 0)
I am just curious why people have to stop taking Humira.

I have been on it for little over a year now and I am not feeling well at all, when I take allergy pills I feel much better though if that is even possible.

I was just wondering if that would be reason enough to stop taking it
Posted 3/6/2011 8:22 PM (GMT 0)
I quit taking Humira because I felt like I didn't need it anymore. I had been on it for over a year at that time. I've now been off it for about 1.5 years, and am doing well with just SCD, LDN, and Pentasa.

My dad quit taking Humira because he felt worse on it then without it. He also felt that problems that started up (ie. he lost the feeling in his fingers) were due to Humira.
Posted 3/6/2011 8:46 PM (GMT 0)
I stopped taking it because it just wasn't working that well for me. I also had really weird side effects while on it that sent me to the ER once. Then about a month later I flared up really bad and ended up in the hospital for 11 days. It was very upsetting to say the least.
Posted 3/6/2011 9:32 PM (GMT 0)
I had been taking Humira for 2.5 months. Thirty six hours after my last injection I developed a fever of 101, extreme large and small joint pain, a severe headache, and wheezing. I went to the see my PCM who sent me to the lab to get blood work. While walking back to his office, I fainted and found myself in the ER. They could not determine the cause of the symptoms though I repeatedly told them it had to be the Humira. I signed out AMA after 8 hours and got a hold of my GI who had prescribed the Humira. He immediately suspected serum sickness and prescribed prednisone.

I'll stop the story here but my rheumy felt it was not serum sickness but a lupus flare brought on by the Humira. I had to be treated for lupus for a year.
Posted 3/6/2011 9:42 PM (GMT 0)
I developed Lupus. We thought at first it was drug induced, but later found I have the marker for
the disease. At the moment it's not flaring, but when it did and does prednisone works well for the
joint problems, but find the fatigue indescribable!!
Posted 3/6/2011 10:02 PM (GMT 0)
I only stopped because it stopped working for me. It worked very well for almost 2 years with no side effects other than some (non-noticeable) hair loss.
Posted 3/6/2011 11:08 PM (GMT 0)
I quit because it caused me to get horrible psoriasis. It never really did very much for the CD and it didn't keep my RA quiet either. It's been 12 weeks off of it and most of the psoriasis is gone, but I look like I have leprosy between my knees and my ankles. I've got my fingers crossed that I can get it to go away so I can wear shorts this summer. A summer in jeans in the south is NOT fun.
Posted 3/7/2011 2:26 PM (GMT 0)
I think it helped my CD, but after a few months the joint pain and the fatigue were unbearable. Turns out  that was nothing compared to what Remicade felt like. The rheumatologist suspects drug induced lupus.

Sarah

Posted 3/7/2011 5:23 PM (GMT 0)
I also developed psriorsis on it and it greatly increased my joint pain. It did seem to help my crohn's, but the side effects it was causing were just not worth it to me.
Posted 3/7/2011 9:04 PM (GMT 0)
I've stopped it a few times to try other biologicals to see if we can find something that helps more with the arthritis, but I always end up back on it because it helps just as much as any of the others for my arthritis and seems to help more with the stomach pain. 

Posted 3/8/2011 3:30 AM (GMT 0)
The only reason I stopped it was because it stopped working. I guess I developed antibodies to it after about three years. It was great though for me while it worked! No side effects and I felt normal for the first time in over 15 years.
Posted 3/8/2011 3:30 AM (GMT 0)
I developed what they think is systemic lupus. Horrible joint pain too.
Posted 3/8/2011 11:09 PM (GMT 0)
I had reocurring bowel obstructions and was put on Humira.
Took it for 6 months and the Humira did not improved the situation at all.
The doctors opinion was that my ileum was so constricted by scars that Humira was not going to reduce it.

Then I had a bowel resection, everything went well.

And now that the intestines are well again, restarted on Humira to prevent inflammation, and everything is going well for 5 months.

TNF inhibitors cannot undo the damage if the intestines are scarred, surgery may be the only option.
TNF inhibitors will work (on some people) to reduce future inflammation as long as there is enough of intestine opening to function.

So, for now, I vote for Humira !
Posted 3/8/2011 11:33 PM (GMT 0)
I stopped Humira because I didn't think it was helping my CD symptoms enough compared to the side effects I got. After being on it about 6 months I also developed psoriasis and weird sores on my scalp chest and back. The sores cleared up within weeks of being off the Humira, the psoriasis took me a few months to clear up and a few more months to get my skin to look normal again.
Posted 3/9/2011 1:49 AM (GMT 0)

yohimbe - that is exactly where I am at.  I have strictures and battling a "flare" since October.  CT scan shows 3 narrowed areas.  Doctor is trying to avoid/dealy surgery for as long as possible.  Been on a high dose of prednisone for 1 month and doing MUCH better.  I start Humira on Wednesday, and will taper off prednisone.  Humira every two weeks, off prednisone by April 6 - then we'll see if I can maintain weight, gain weight, remain pain & symptom free.  If I start to have trouble again, then it's my first surgery. 

Posted 3/9/2011 10:41 AM (GMT 0)
It is possible that allergy pills make you feel better. Probably has something to do with your allergies :P

I'm completely miserable if my allergies are acting up. Usually triggers a flare, too.

Anyway, I stopped taking humira because i didn't have insurance, and was in a clinical trial for it. My doctor can't alter doses to actually treat me in that situation. I saw improvement from the loading dose, but was put on placebo shortly afterwards. Never recovered. Drug not working = drop out of study. At least I got paid a little.
Posted 3/10/2011 12:26 AM (GMT 0)
For me the Humira stopped working. Crohns kicked in and I was flaring. In the time that it did work for me, approx. 7 months, life was great!!
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