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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Flare while on Humira??


02-17-2013, 01:43 PM   #1
lss
 
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Flare while on Humira??

Have any of you been on Humira and then had a flare? What happened next - increase dose, change meds, etc? I'm anxious waiting for biopsy results to confirm whether my cutaneous crohn's in my vulva is active again. but it seems like I have enough other symptoms that haven't been around for a few years to warrant that I'm in a flare.

any thoughts, support, experience would help ease my mind - my anxiety is overwhelming at times, guessing, etc. and could use some re-assurance. I know to call my Dr. but that is a long story in itself.
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LSS in Bothell, WA
Crohn's diagnosed in 2007 in late 40's
2 intestinal bleeds, iritis, episcleritis & vulva fissures before diagnosis and treatment
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2 years on Entocort
2 years on Humira (1st year w/Imuran)
02-17-2013, 03:19 PM   #2
hannah-rose
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It's not happened yet to me personally but you can increase Humira from one every two weeks to once a week, so perhaps your doctor will recommend this. How long have you been on Humira?

Hannah x
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02-17-2013, 03:57 PM   #3
lss
 
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I've been taking Humira for 2 years, the first year along with Imuran. I have a rare and hard to treat form of Crohn's - metastatic cutaneous in my vulva and perianal area. have had 2 separate biopsies down there now and it is disconcerting.

I guess my question is should you have absolutely NO FLARES while on Humira or is it normal to occasionally have a flare up with no big concerns? In oher words, does a flare while taking Humira mean something has to change in terms of dose/medicine? I have read that Humira does stop working at some point. My anxiety isn't helping the stress. and if the flare came on due to stress or diet, do the doctors usually wait and see or just assume it isn't working any more??

I'm going on vacation for a few days this week so I'm nervous I won't get in to see anyone for awhile. Thanks for writing - I hope others chime in as well. could use some support & others experiences.
02-18-2013, 01:51 PM   #4
hannah-rose
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I have perianal crohn's which is in the form of anal fissures, mine's unusual too. I think it can be common to have symptoms while on meds, but hopefully the symptoms will be reduced. My bum is a lot better on Humira than it was before I started it. It's not perfect and I have to watch my diet and take 6MP but it lets me live a normal life.

I think Humira, Inflix etc do stop eventually, but the dose can be increased, and there are new TNFs being developed as we speak. I think to reduce your anxiety you need to speak to your doc, stress definitely isnt good for your health.

can anyone else offer any advice?
02-27-2013, 08:06 AM   #5
Scaryman
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Have any of you been on Humira and then had a flare? What happened next - increase dose, change meds, etc? I'm anxious waiting for biopsy results to confirm whether my cutaneous crohn's in my vulva is active again. but it seems like I have enough other symptoms that haven't been around for a few years to warrant that I'm in a flare.

any thoughts, support, experience would help ease my mind - my anxiety is overwhelming at times, guessing, etc. and could use some re-assurance. I know to call my Dr. but that is a long story in itself.
Well as always anything with Crohn's is individualized. But in order for Humira to properly be gauged on effectiveness with anyone no matter the circumstances medically, it needs to be given a chance to work over 8-12 weeks. Then reevaluate from there. I have yet to have a flare on Humira. But with 3 strictures from inflammation it was urgent to get the inflammation under control and fast to avoid Strictureplasty or surgery in general. Hope that helps.
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03-02-2013, 05:34 PM   #6
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I have had pain in my ileum but I have definitely noticed firmer stools so that could be a factor?
03-06-2013, 07:57 AM   #7
guest78
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I took Humira for 2 years before having a flare. I was put on steroids to try and kick it in to tough, and then my Humira dose was increased.
I am now on one injection every week and my symptoms have gone!
xxxxx
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03-06-2013, 08:45 AM   #8
Scaryman
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I took Humira for 2 years before having a flare. I was put on steroids to try and kick it in to tough, and then my Humira dose was increased.
I am now on one injection every week and my symptoms have gone!
xxxxx
Wonder if that's a normal thing with humira. Does your body get used to it etc.
03-06-2013, 08:49 AM   #9
guest78
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I'm not sure. My Dr was quite shocked I think when I had this flare, so I don't think it's usual. She couldn't explain why it had happened.
I know that combining Humira and aza together helps the effectiveness.
Xxx
03-06-2013, 10:04 AM   #10
Manzyb
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When I was 2 years into Humira I had a huge flare and was hospitalized. After that, they upped my dose to one shot every week.

I hope that if you are flaring, it is a mild one, and maybe they can fix it with steroids quick? Feel better!
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05-21-2015, 10:38 PM   #11
irishgal
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I also have a metastatic presentation. Nothing worked, until I went on the AMAT therapy. Then it all just melted away. I have my life back. Having Crohn's plus the metastatic presentation all at once was just too much. Then went to Disney for a week with the kids. Haha - I can't believe I survived. I was told by a doc with some experience with the metastatic presentation that Remicade anecdotally had the best chance of helping, but it didn't help me for long. Flagyl is good short term or try topical clobatesol. Both of those worked moderately well until I found AMAT.

Hoping I can sustain long term remission with both presentations. I'd love to hear how you're doing. I know this is extremely rare.
05-26-2015, 09:43 PM   #12
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PS: I apologize if I offended anyone with my previous post. I in no way meant to suggest that GI Crohn's was not as horrible, debilitating and life threatening as the metastatic portion. I never knew about the metastatic presentation until I got it, and had no idea Crohn's could be anywhere other than my GI tract. My doc told me there was no treatment pathway so emotionally that was very difficult to deal with. The point of my post was to reach out to anyone who had the metastatic portion and tell them I personally know that they suffer in a different way than GI Crohn's patients do, and hopefully offer some treatments that worked for me. Again, I stand with you all and wish the very best to all Crohn's patients who have had their lives altered due to this disease.
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