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02-12-2016, 12:19 PM   #1
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I'm looking for someone who has a similar story on if they got Crohn's from NSAIDS

I am a 41 year old male and I believe I got crohn's disease from taking doctor prescribed nsaids (anti-inflammatory meds). About a year ago I had severe pain in my right knee, went to orthopedic, had mri and x-rays done, was told I have microscopic tears and/or tendinitis. He put me on 800mg ibuprofen and said I could wait see if it heals on its own instead of surgery. After few weeks the ibuprofen was killing my stomach and diarrhea was really bad. The doctor switched me to celebrex, another nsaid. I was still having knee pain but now having diarrhea for about 6 months. Pain was excruciating all over my body, I became anemic and lost 30lbs. I went to a GI doctor, had a colonoscopy and was told I now have crohn's disease. I never had gi problems in my life and have no family history of the disease. This happened directly from the nsaids but no doctor will admit to it nor will any lawyer take the case because it's just not common. So here I am now taking humira shots every 2 weeks for the rest of my life. The humira worked , almost got it into remission but then I caught an infection and had to come off the humira for about 2 months, I started flaring up and just started back on humira but the crohn's is back pretty bad again. I hope it works the second time this pain is 24/7 and my doctor has terrible bed side manner. I need a good gi doctor in Woodbridge nj area and if anyone else believes they got crohn's from nsaids I'd love to hear from you. Thanks
02-12-2016, 12:25 PM   #2
Eridon2002
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Some people have asymptomatic Crohn's. Perhaps you had Crohn's all along and the use of NSAIDS pushed you into a flare?
02-12-2016, 12:29 PM   #3
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That's what the doctor said I guess so, it's just so weird how I never had any problems for 41 years now I have this disease showing it's nasty face
02-12-2016, 12:37 PM   #4
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So now my next question is since I had to go off humira for 2 months to get rid of am infection it caused , my crohn's came back or the flare ups did .I started back on the humira, took first 4 shots again a week ago and haven't felt much better yet. How long until it stops hurting or until the humira starts working again? The pain is constant but definitely more severe after I have to go to the bathroom. Any advice out there. Should I eat less or a certain type of food like those ensures?
02-12-2016, 12:47 PM   #5
my little penguin
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Humira takes 3-5 months to take full effect
Formula only ( ensure ) can work the same as steriods to help with inflammation until the calms down from humira might be worth asking your Gi about

Lots of people young ( my kiddo age 7 at dx ) and old get crohns
Period
Regardless of whether they ate super healthy worked out every day or what med they took...
The exact cause of every type of crohns really isn't know yet ( and there are more than a few types )

No family history for Ds
But when he had his DNA ran through23&me Ibd study
Tons of crohns genes - so the genetics were in the family

Even though no one wise officially has crohns

Hope humira kicks in soon
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02-12-2016, 12:54 PM   #6
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Humira takes 3-5 months to take full effect
Formula only ( ensure ) can work the same as steriods to help with inflammation until the calms down from humira might be worth asking your Gi about

Lots of people young ( my kiddo age 7 at dx ) and old get crohns
Period
Regardless of whether they ate super healthy worked out every day or what med they took...
The exact cause of every type of crohns really isn't know yet ( and there are more than a few types )

No family history for Ds
But when he had his DNA ran through23&me Ibd study
Tons of crohns genes - so the genetics were in the family

Even though no one wise officially has crohns

Hope humira kicks in soon
Thank you I will try ensure and hopefully the humira kicks in sooner than later , this pain is unbearable at times
02-12-2016, 01:09 PM   #7
ronroush7
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So now my next question is since I had to go off humira for 2 months to get rid of am infection it caused , my crohn's came back or the flare ups did .I started back on the humira, took first 4 shots again a week ago and haven't felt much better yet. How long until it stops hurting or until the humira starts working again? The pain is constant but definitely more severe after I have to go to the bathroom. Any advice out there. Should I eat less or a certain type of food like those ensures?
Were you tested for antibodies before going back on the Humira?
02-12-2016, 01:21 PM   #8
scottsma
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Ibuprofen should NOT be taken by those with crohns.I think it's been dormant,unbeknown to you and your Doc,and the Ibuprofen has aggravated it.
Feel better soon.
02-12-2016, 01:30 PM   #9
Scipio
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"That's what the doctor said I guess so, it's just so weird how I never had any problems for 41 years now I have this disease showing it's nasty face"

Crohn's didn't hit me until my late 50s, so late onset by itself probably does not suggest that the NSAIDs caused it.
02-12-2016, 02:30 PM   #10
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I never been tested for antibodies my doctor just immediately put me on humira once he diagnosed me with crohn's. I appreciate everyone's input. I have so many questions and have a moron for a doctor. I definitely have to find a better gi but also I wanted to know if my crohn's or taking humira can lead to cancer. I believe when I had the initial colonoscopy the polyps they found weren't cancerous
02-12-2016, 02:33 PM   #11
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This disease really sucks, I have to work in excruciating pain. I hope they can fid a cure soon. I feel like a big baby but it hurts like hell
02-12-2016, 02:34 PM   #12
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Sometimes , when a person has been on a biologic like Humira they can't always go off and then go back on. That is why I asked about being tested for antibodies.

02-12-2016, 02:35 PM   #13
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This disease really sucks, I have to work in excruciating pain. I hope they can fid a cure soon. I feel like a big baby but it hurts like hell
I am sorry. I hope the doctor can get you in the right meds soon.

02-12-2016, 02:57 PM   #14
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There are peak ages when Crohn's can show up, but anyone can go into a severe flare and be initially diagnosed at any age. I was diagnosed at age 60. Only 12 months or so prior, I'd had a colonoscopy as a promise to a friend who died of colon cancer. Doc said it was one of the "best set of bowels" he'd ever seen. No polyps, no nada. (Really, do these guys get happy when they see nice colons? lol) By the time I was diagnosed, I was having over three dozen sessions a day on the toilet; wearing Depends to try to make it to the bathroom at work, etc. That colonoscopy showed that I had "ulcers on top of ulcers," skip lesions, and "a dozen" fistulae.

Yes, I'd been on heavy NSAIDs, and had had two perforated stomach ulcers as a result. No doubt that exacerbated the Crohn's. But on thinking back, were those strange episodes of occasional diarrhea for no reason actually minor flares? Did some foods get the blame when they were just innocent victims of a gnarly immune system?

GI guy tested my DNA twice - neg for CD genes. 23andme showed no genes for it; in fact, I had a reduced risk!

When unpleasant things happen, humans try to look for a reason. It's as though we feel if we have a reason, then we can prevent something similar from happening to us or a friend/loved one in the future. But some things just don't have one; they're just the luck of the draw.

Is there a reason why they didn't try Remicade with you? Is it because the Humira works better on your arthritis? I get some relief from Remicade, and my doc says the occasional patient will get some control over CD arthritis with it, but not over rheumatoid (and certainly not osteoarthritis).

I feel so bad for you. I'm given a stash of Norco (hydrocodone) to use if necessary, but not too much, for the obvious reasons.
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All doctors are informed that I'll never use prednisone again unless I'm admitted unconscious via the E.R. If that happens, when I awaken I'll stab the doc who ordered it right through the heart.
02-12-2016, 02:58 PM   #15
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Oh I see , so you think I may be immune to the humira now? How long to know if I am or if it's working? So I should get tested for antibodies now even though I'm back on the humira?
02-12-2016, 03:04 PM   #16
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There are peak ages when Crohn's can show up, but anyone can go into a severe flare and be initially diagnosed at any age. I was diagnosed at age 60. Only 12 months or so prior, I'd had a colonoscopy as a promise to a friend who died of colon cancer. Doc said it was one of the "best set of bowels" he'd ever seen. No polyps, no nada. (Really, do these guys get happy when they see nice colons? lol) By the time I was diagnosed, I was having over three dozen sessions a day on the toilet; wearing Depends to try to make it to the bathroom at work, etc. That colonoscopy showed that I had "ulcers on top of ulcers," skip lesions, and "a dozen" fistulae.

Yes, I'd been on heavy NSAIDs, and had had two perforated stomach ulcers as a result. No doubt that exacerbated the Crohn's. But on thinking back, were those strange episodes of occasional diarrhea for no reason actually minor flares? Did some foods get the blame when they were just innocent victims of a gnarly immune system?

GI guy tested my DNA twice - neg for CD genes. 23andme showed no genes for it; in fact, I had a reduced risk!

When unpleasant things happen, humans try to look for a reason. It's as though we feel if we have a reason, then we can prevent something similar from happening to us or a friend/loved one in the future. But some things just don't have one; they're just the luck of the draw.

Is there a reason why they didn't try Remicade with you? Is it because the Humira works better on your arthritis? I get some relief from Remicade, and my doc says the occasional patient will get some control over CD arthritis with it, but not over rheumatoid (and certainly not osteoarthritis).

I feel so bad for you. I'm given a stash of Norco (hydrocodone) to use if necessary, but not too much, for the obvious reasons.
Wow I'm sorry to hear about your crohn's, sounds like you been through some serious pain too. I don't know why he didn't try me on anything but humira and delzicol pills that's it. When I find another gi I'll ask him about rehmicaid. And I know it's probably just no one's fault but it came out of no where from one injury not even related to this now. But I just need it to be controlled now with a medication with least side effects. Humira gave me a nasty infection
02-12-2016, 03:25 PM   #17
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What a sweetie you are. Thanks for the sympathy - no tea, because it causes diarrhea. Your problem seems to be the arthritis. I was sent to a specialist for it who tried to convince me to switch to Humira from Remicade, saying that Humira was far better for arthritis. My GI guy agreed, but said since I had fistulae, Humira wouldn't help nearly as well as my Remi, which was working like a charm on the CD.

Even though I have no antibodies to Remicade yet, he told me that if I switched to another biologic, there was no guarantee the original one would work as well - or at all - as it had before. I'm wondering if your vacation from Humira caused something like that? However, as mentioned above, you might just have to wait a few months for it to kick in again. That stinks.

NSAIDs were a dream for a while; then they turned into a nightmare. I sure wish I could still take them. I bet you do, too.
02-12-2016, 03:49 PM   #18
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What a sweetie you are. Thanks for the sympathy - no tea, because it causes diarrhea. Your problem seems to be the arthritis. I was sent to a specialist for it who tried to convince me to switch to Humira from Remicade, saying that Humira was far better for arthritis. My GI guy agreed, but said since I had fistulae, Humira wouldn't help nearly as well as my Remi, which was working like a charm on the CD.

Even though I have no antibodies to Remicade yet, he told me that if I switched to another biologic, there was no guarantee the original one would work as well - or at all - as it had before. I'm wondering if your vacation from Humira caused something like that? However, as mentioned above, you might just have to wait a few months for it to kick in again. That stinks.

NSAIDs were a dream for a while; then they turned into a nightmare. I sure wish I could still take them. I bet you do, too.
Your welcome and sympathy is ok considering most doctors i dealt with don't know what that is so I commend you on how strong you are dealing with fistulae especially. I too have those. I had a question, is Remicade oral or injection? If the humira still works for me I'm hoping it does cause it did make me almost 100% I just had a little spot blood on tissue but pain was pretty much gone. I am hoping I can get back to that. Right now it's only been a week and I took a picture of my anus and can see a polyp visible right near the opening. Sorry for the nasty details but just looking for all advice I can get
02-12-2016, 05:17 PM   #19
ronroush7
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Oh I see , so you think I may be immune to the humira now? How long to know if I am or if it's working? So I should get tested for antibodies now even though I'm back on the humira?
Yes. I will also tag Clash.

02-12-2016, 05:45 PM   #20
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There are two tests you could have run the first would be an antibodies level test to make sure the time off humira didn't allow for antibodies to form (this makes the drug ineffective) and a trough levels test to determine if you have an effective levels in your system, if not the doc can adjust the schedule.
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02-12-2016, 06:14 PM   #21
Scipio
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" I had a question, is Remicade oral or injection?"

Remicade is an infusion - sort of dripped into a vein via needle.

Antibodies to either Humira or Remicade do not arise until after you have been on the drug for a while. so there was no reason for your doc to test you for antibodies prior to your first Humira injection. Just putting you straight on Humira was probably the right thing to do.

The main effect that you might notice from the formation of antibodies is that after a while the drug doesn't work as well in controlling symptoms or it even stops working altogether. The doctor tests for the presence of antibodies and for the level of drug still circulating to confirm the reason why the drug is no longer working so well.

Depending on what the tests show the doctors may choose to boost the dose of the current drug, switch to another biologic (such as switching from Humira to Remicade), adding an immunosuppressant to the current drug, or stopping biologics altogether and trying another therapy.
02-12-2016, 06:33 PM   #22
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" I had a question, is Remicade oral or injection?"

Remicade is an infusion - sort of dripped into a vein via needle.

Antibodies to either Humira or Remicade do not arise until after you have been on the drug for a while. so there was no reason for your doc to test you for antibodies prior to your first Humira injection. Just putting you straight on Humira was probably the right thing to do.

The main effect that you might notice from the formation of antibodies is that after a while the drug doesn't work as well in controlling symptoms or it even stops working altogether. The doctor tests for the presence of antibodies and for the level of drug still circulating to confirm the reason why the drug is no longer working so well.

Depending on what the tests show the doctors may choose to boost the dose of the current drug, switch to another biologic (such as switching from Humira to Remicade), adding an immunosuppressant to the current drug, or stopping biologics altogether and trying another therapy.
OK, thanks . I only been off humira for 2 months because I got an infection and was only on it for about 8 months prior.
02-12-2016, 07:02 PM   #23
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Both my girls have arthritis - Ankylosing Spondylitis to be specific. Both have been on NSAIDs for years. My younger one was diagnosed with Crohn's four years after being diagnosed with arthritis and after 4 years of NSAIDs. We don't know and can't know if she would have developed Crohn's even if she hadn't been on the NSAIDs. I think it was more likely that it was genetic - Crohn's and AS share many genes.

She is still on NSAIDs because her AS is much worse than her Crohn's and both her GI and rheumatologist agree that she needs them. NSAIDs do not appear to make her Crohn's flare - so far, we have been lucky and her Crohn's has been relatively easy to control. She has also been on Remicade and Humira and is currently on a different anti-TNF.

My older daughter has been on NSAIDs for 7 years and has not developed Crohn's or UC. My husband also has AS and has been on NSAIDs for 25+ years and has never developed IBD.
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02-12-2016, 07:07 PM   #24
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Scipio, I wasn't talking about before starting the humira for the first time. I was talking about having to come off for 2 months then start back, which is what the poster had to do. If the med does not ever seem to catch back on again then he may want to run a antibodies level test.

In studies it was shown that the schedule of episodic treatment led to higher risk of immunogenicity. This led to the discovery that if you were on the med for any amount of time and came off then started back the chance of creating antibodies was higher. Having to stop the med for whatever reason then start back can have the same risk of immunogenicity as episodic treatment did when biologics first became available.
02-12-2016, 07:15 PM   #25
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As Scipio (the general??) said, Remicade is an infusion - like the drugs for cancer. It's run through an IV, and takes about three hours. The first time takes longer than subsequent ones, but they always start out slowly to avoid severe allergic reactions (anaphylactic shock). If you're fine, they speed up the drip in about 15-20 minutes. It's a mixed mouse/human (chimeric) antibody. Humira is made completely from a human monoclonal antibody.

Your Humira injections every other week (that's typical, right?) may sound like less trouble, and I guess they are. But once you're established on Remicade, it's only every eight weeks, so it's not as bad as it sounds. I've had no side effects at all, except for crashing into sleep for about eight hours after a session. The next morning I'm tired. After that? Nothing at all, except normality, a state we all desire.

It has the same risks, though, as Humira. You could get infections again. That's the nature of how our disease has to be treated.
02-12-2016, 07:41 PM   #26
Scipio
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"Scipio, I wasn't talking about before starting the humira for the first time."

Yes, I know. I was responding needanswers statement and possible dismay in post #10 that he was put right on Humira without any testing. Sorry for not being clearer.
02-12-2016, 08:38 PM   #27
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Ahhh ok and agreed no need to test when you first start.

Last edited by Clash; 02-12-2016 at 10:38 PM.
02-12-2016, 10:16 PM   #28
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I was on NSAIDS for a while due to hip pain when I was diagnosed. I think it contributed to the flare, but I believe I had the disease in me prior. Had a couple of times with really bad pain when I was younger but never saw a Dr about it. Also had what I thought were normal "tummy issues" as a young adult, looking back it may have been Crohn's related. I was tested and did not have the genetic markers for IBD. No one in my family has it, though my mom does have occasional bowel issue that seem all too similar to what I have gone through.
Even now it's hard to tell if some things are caused by, related to, or have nothing to do with the disease...just too complicated of a disease it seems!
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02-13-2016, 10:38 AM   #29
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Thanks to everyone I appreciate all the info it helps a lot with the anxiety. I will post an update on how amd if the humira takes effect for second time. So far it's been 1 week and I haven't been able to tell yet.
02-13-2016, 11:09 AM   #30
Clash
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Oh sorry need answers I wasn't aware you had only started back for a week. It can take some time for humira to reach therapeutic levels.

Just keep in mind if things don't improve after a time that a trough level test and antibodies test may help determine if you should adjust your humira schedule or continue on with it. Good luck.

Also antibiotics can really do a number as well and it can take some time to get things back to normal.
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