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Crohn's Disease
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Posted 11/4/2008 2:10 AM (GMT 0)
Hi! I don't write often but I am a regular and find a lot of support and answers to questions that nobody but someone with Crohns seem to be able to answer. So thank you in advance. My now 18 year old son was diagnosed two years ago. He was on 8 months of Prednisone trying to get off three times without success. He then went on Remicade and although he improved he was unable to get into remission even when he after 8 months went on a max dose. The periods between treatments became shorter and shorter until he had to go off Remicade due to developing antibodies and along with it horrible joint pain. He was on Imuran during the first half of Remicade and on Methotrexate during the second half. So he began Humira at the end of August along with Methotrexte. Shortly after he stopped the Remicade his joint pain disappeared. He takes his injections every other week and it seems that he starts pooping out around 3 days before his next injection. His SED rate seems to be creeping up and I am fearful that the Humira is behaving similarly to the Remicade. Has anyone had similar experiences with Humira. I also feel like the Remicade ,when it was working gave him more of a kick of energy than the Humira seems to do. How would others compare their Remicade experience to their Humira? Just curious if I should be worrying that this is as good as he is going to feel. Thanks for your input.
Posted 11/4/2008 2:48 AM (GMT 0)
How long were you able to stay on Humira?
Posted 11/4/2008 3:01 AM (GMT 0)
I was on Humira for 3 to 4 months with no help at all. The only time I felt good was on Pred. I started Tysabri and feel "normal" again. No Symptoms.
Posted 11/4/2008 3:56 AM (GMT 0)
While Remicade worked faster for me (in terms of noticing results), I felt better for longer with Humira. When I was on weekly Humira (vs. biweekly), I had a sweet couple of months where I felt better than I had since diagnosis. When the Humira stopped working for me, there was no allergic response as I had with Remicade, I just started to feel lousy when trying to wean off the Prednisone. I was on Humira for a total of 8 months.
Posted 11/4/2008 1:08 PM (GMT 0)
Hi I don't know much about the hum. but did do the Rem. it only helped for a short time for me. Hoping the Hum. will help him. Has he tried diet changes and vitamins? Where is his CD located? Sure hope he feels better. lol gail
Posted 11/4/2008 2:43 PM (GMT 0)
His CD at diagnosis included his colon,TI, rectum, and his stomach. Most of his disease is in his TI,colon, and rectum. He is on a prenatal vitamin, Tums, vitamin D, Folic Acid, Iron and B-12 injections. We have not messed around too much with diet. When he is more inflamed he starts limiting what he eats and consequently starts dropping weight which he can't afford. We have toyed with the idea of going gluten free. His pain is not his greatest symptom. For him it is more oppressive fatigue.
Posted 11/6/2008 3:02 AM (GMT 0)
I have been on humira for four months and, while I feel stronger than last spring, I am having a hard time. The last 2 days before the shot and the day of the shot have been horrible---constant D. D so bad that I get off the toilet, go down the stairs, and have to race back to the toilet. I was really hoping this drug was going to work. My sed rate is over 130 and my iron is low. Platelets are 640 which makes me nervous. Doc and I are to talk this week. Start something new? Give humira another 2 months? I don't know.

I hope it works for your son or that you all find something that does soon! Best to you both.
Posted 11/6/2008 3:30 AM (GMT 0)
Just a thought or two from my perspective.

First, everyone needs to give Humira at least 4 months to see any results. I think going off it sooner than that is just not wise, unless you are having worsening of symptoms or some allergic reaction. Then certainly you must talk with your doctor and most probably stop the medicine.

Secondly, I have noticed that it seems to me that younger patients do not respond well enough to Humira. I am on Humira and have been for about 2 1/2 years. I have had great success, but I am 47. I read most all threads on Humira and I seem to notice that teenagers and those in their 20's seem to have the worst results with Humira. I could be completely wrong, but it is just my observation.

I really hope and pray for good results with some type of medication for your son. I would recommend trying the gluten free diet and a good probiotic, at the very least.
Posted 11/6/2008 4:39 AM (GMT 0)
Well, my feeling is that you stay on anything that is at least allowing you to function as long as you are not having any detrimental side effects. So far although the Humira seems to be wearing off early it is helping. Thank you so much for your well wishes. Support is always helpful. He is considering the gluten free diet but it is not necessarily encouraged by the medical establishment. Thanks again.
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