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Crohns and Humira

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Crohn's Disease
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Posted 4/16/2010 8:14 PM (GMT 0)
I was diagnosed with Crohns about three years.  After my third flare in two years, my GI convinced me to start using Humira.  Since he is the doctor, I went with what he thought was best.  Now I am doubting myself... After reading a lot of the forum posts, I don't feel like my crohns was nearly as bad as a lot of the people here.  I found out at my last visit that my doctor is involved with research for the makers of Humira.  I sort of feel like he pushed me towards this drug because of his own self interest (I'm part of a registry study)  Do any of you think I jumped the gun?  Now I'm wondering if I should try to get off Humira - I hate putting that stuff in my body every month.  Any suggestions or thoughts? 

Thanks! 

Posted 4/16/2010 9:15 PM (GMT 0)
Well, the first question is - is the Humira working? Does it keep your Crohn's quiet? Are you having any major side effect from it? How severe was your flare? Ask your doctor what factors he based his decision on to put you on humira. Ask him why he thinks humira is the best med to try first instead of other medications. I think you need more information so that you can make the decision that is best for you.
Posted 4/16/2010 10:04 PM (GMT 0)
I just chose remicabe over humira but i have to go to a infustion center at hospital to get it put in arm. I just had it done yesterday because I am just starting and i feel no diffrent but have another appoitment in 2 weeks. Remicabe is a mouse protein and Humira is a human protein and with Humira you inject your self. I had to get off of mercaptrine because of high liver levels. Ascol I am still on. I am 22 just starting Remicabe in WI....

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Post Edited By Moderator (MMMNAVY) : 4/16/2010 9:40:43 PM (GMT-6)

Posted 4/18/2010 9:49 AM (GMT 0)
I just don't understand why my docto went so quickly to Humira. I thought it was for people that didn't respond to other treatments and since I only had three flares, it doesn't seem like we tried all our options before going for the big guns!!
Posted 4/18/2010 9:49 PM (GMT 0)
Some doctors believe it is better to start people - especially if newly diagnosed - on the big guns. This gives a better chance of achieving remission quickly, with a smaller risk of developing the complications that can occur during the months when you're experimenting with the usual "front line" drugs (5ASAs, steroids, immunosuppressants, etc) trying to find one that works.

Sometimes this is referred to as the "step down" rather than the "step up" approach.

I hope this helps!

Ivy.
Posted 4/20/2010 2:04 AM (GMT 0)
I would say you definitely need to do more figuring out of what YOU want and need. One thing anyone especially here will tell you is that you know your body best and it needs to be your decision. Yes all docs have their drugs they are more familiar with. When I was at that stage of choosing which treatment to go to next and all they were saying was the 'big guns', I was seeing 3 docs at the time and all three of them said different drugs, not because they had a legit opinion on the differences between the drugs..., but because they all get kick-backs from their specific company. And that really bothered me, I was there talking with the best docs in the state and all three strait up told me they base their opinions on the kick-backs they get!! So I'm not here to tell you which treatment to do or not do that's your decision alone. But I would just say don't submit to the will of what other people tell you to do. It's great to get others hop and opinions, that's why I'm here too! But do what is right for you. Of you do what you want and believe in that is when it will work the best no matter what the decision is.

Hold strong you can do it, and you know we're here for you!
Posted 4/20/2010 4:01 PM (GMT 0)
I'm always a little wary about doctor's reasonings, too. Not long after my diagnosis, I wasn't able to get off prednisone with Lialda alone, so my GI immediately recommended Remicade. Even though now I'm more for the "step-down" approach, I was freaked out about getting infusions, so I went in for a second opinion. I was new to the game then and had no idea there were the other options of Humira, Cimzia, 6-MP, methotrexate, etc. and when I brought all that back to my GI, he was a lot easier to deal with. Though I ended up on Remicade in the long run, I started off on Humira and I'm even thinking about switching back for a few different reasons.

If you think Humira isn't worth it for you, talk to your doctor about swtiching. But if it's working for you and you're not struggling with side effects (and you can afford it), you may want to consider staying on it a while.
Posted 4/20/2010 4:07 PM (GMT 0)
Also, what other meds have you tried? If you had had three flares, maybe you weren't actually responding well to other treatments.
Posted 4/20/2010 4:24 PM (GMT 0)
Hi i did exactly that told my do it was not for me
i have no problems with him as due to all issues /illesses i hve he said thats fine you know own body
and i do so i did not use the hunira stay safe

lyn
Posted 4/20/2010 4:28 PM (GMT 0)
Hi i did exactly that told my do it was not for me
i have no problems with him as due to all issues /illesses i hve he said thats fine you know own body
and i do so i did not use the HUMIRA............. stay safe

lyn
Posted 4/21/2010 2:02 AM (GMT 0)
In some ways I wish I'd been given Humira last Summer for my most recent flare. Instead, I wound through Pentasa, Entocort, Prednisone, 6MP until I got a fistula to my bladder (one of the "complications" ivy referred to) and required surgery. As it happens, I probably needed the surgery anyway, what with a bad ten inches of bowel for at least my whole adult life.

But still, I can see why some docs go straight to the big guns these days. You should trust your instincts with how you feel around your doctor, not facts you assembled like a fly-by-night Perry Mason. If your doctor listens to you and has kept your flares from coming back with his treatment, then great, consider yourself lucky for now. If not, then find someone else and move on. The drugs are scary, but this disease is far scarier.
Posted 4/21/2010 10:57 PM (GMT 0)
I started with Pentasa and then Asacol and was told my disease was mild. 9 years later I'm having surgery cuz my disease slowly got worse. I wish they would have given me the big guns sooner, maybe I would not have needed surgery.
I've been on Humira since Jan 2010 and am doing really good on it. I'm going to ask my doc for another scope in december and see if my Crohns has quieted down if not on to something else.
Good luck!
Posted 4/22/2010 6:39 AM (GMT 0)
Some very well-put explanations in here. The general consensus is that jumping to the stronger medicines first will increase the chance of a quick remission and decrease the chance of continuing inflammation within the body. Each day with reduced inflammation is a day which scar tissue isn't allowed to build up as quickly, if at all. Staying on these biologics for as long as possible, bearing any serious side effects, likely reduces your chances of serious complications in the future years. Be glad that you're still young and there are many more efficient treatments in your future, so keep your insides in good condition until the next best thing comes out.
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