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Using remicade or humira to get off of pred.

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Crohn's Disease
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Posted 6/23/2011 2:32 PM (GMT -5)
Hi guys,
My mom went to an appt with a new GI who is suggesting that she go on Humira or Remicade for a short period in order to wean off of a small amount of pred. My mom has been on pred for 35 years, and her bones are suffering badly. She also has been on Imuran for many years and it has kept her in remission. I was just dx a year ago and until recently didn't know enough about crohns to understand that her old GI doctor probably wasn't giving her the help that she needed in managing her medicines. Now she is asking me for advise on which medicine she should go on. I'm curious, have any of you been on the biologics short term to get off of pred? Any advise for my dear mom? Thanks!
Posted 6/23/2011 9:12 PM (GMT -5)
I've heard that biologics aren't typically used short term because your body can build up antibodies to it. That being said, my doctor put me on Cimzia, which I did not want to go on (not a medicine fan) and agreed to scope me 9 months after I started it to see if my disease was in remission, and if it was she said I could come off it. How much prednisone is your mom on? Does she start to flare when she tapers?
Posted 6/23/2011 11:47 PM (GMT -5)
Hi Nikky, She's on 7mg I think, and yes she has tried to wean off and flared. Poor lady has been through so much!
Did the Cimzia work for you? Hope so. I'm not a fan of being on meds either, but I guess sometimes we need them.
Posted 6/24/2011 5:17 AM (GMT -5)
From my experience & what I've read, biologics aren't typically used for short term use. Some people have been on Remicade for many years. If you and she both can find an IBD specialist in your area that would probably be my suggestion. I found out from experience that a general GI doesn't always have the experience or up to date knowledge of our disease and how to treat is. JMHO.
Good luck to you both.
Posted 6/24/2011 4:13 PM (GMT -5)
It's hard to say if Cimzia worked. I've only had two doses, and I wasn't actively flaring when I started. I'm pregnant and flared at the beginning of my pregnancy, and my dr's are worried I'll flare again when my hormones change after I have the baby. Plus, I really think dr's just like putting people on medicine. Anyway, I wasn't really having any symptoms, so I can't say it's better... How long does your mom's dr want her to be on Remicade? Did he say why she couldn't stay on it longer term if it was helping her? I hope things work out well for both you and your mom!!
Posted 6/26/2011 3:26 AM (GMT -5)
Hi, I have been on both Remicade and Humira. I am on Humira and I
am in remission. Thats the only med that I am on for my CD.
Posted 6/26/2011 9:37 AM (GMT -5)
Trickinikki, you would be smart to stay on some type of med for Crohns at all times. If you are not treating the disease at all times thats when all the bad stuff starts happening. So I hope you stay on meds at all times. Hugs!
Posted 6/26/2011 10:28 AM (GMT -5)
I spent the past year going off and on Entocort and Pred. Developed a few fistulae (made my life awesome) and ultimately went on Remicade. It's really the only thing that's worked for me since this flare started. I'm having surgery in a few weeks because the damage I've had is already done. I'm under the impression that once you go on a biologic, you're on it until it stops to work. The Remicade studies show that response at 1 year for remission was almost twice that for people who staye don the drug vs. people who only took the loading doses. I've talked to my GI about it (I went on begrudgingly because I got so sick I could barely walk from the fistula) and I'm pretty much on it until it stops working for me. Terrifying, but I have a life back and I feel better. If only I could get the fistulae to close and stop draining, I'd not be having this resection....

I'd tell your mom to go for it. Long-term pred use is much scarier then biologic usage. I'd also have her think about skipping the Imuran when taking biologics...and Imuran does stop working after a while (I spent 8 years at 50, then 75, then 100mg).
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