So, a quick rundown of my Crohn's. I was diagnosed 25 years ago. I just had my fourth flare-up at the end of January. I've never had surgery. Right now I'm taking Entocort because the Prednisone was making me feel like I was drinking espresso around the clock and on an emotional roller coaster. My doctor is pushing hard for me to take Humira or Remicade. He says that the amount of my gut that's effected by the Crohn's now warrants taking one of those drugs. If I pick one it will be Humira, since I'd rather inject myself than have to get infusions. Humira seems terrifying. When you read that a drug can give you Hepatosplenic T-Cell Lymphoma you think "Why would I sign up for that?" Any insights anyone has in terms of the safety/effectiveness/risks vs. rewards of the drug for someone who is otherwise healthy and relatively young would be greatly appreciated. Thanks everyone!
Is Humira my best treatment option?
- Thread starter TIR
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Hi TIR,
I'm virtually a virgin at this, lol. I've been diagnosed with Crohn's and UC for two years or so. I'm a science guy, having gone to medical school for a couple of years until I decided that's not what I wanted to do with my life. Having said that, I still read everything I can get my hands on about medicine.
When I first presented to my gastroenterologist, my diarrhea and pain was off the charts. He took one look at the film from the colonoscopy and said, "I'm putting you on Humira immediately." (the gentleman who did the colonoscopy in another town had put me on prednisone and something else that was worthless.) I CRINGED. All I could hear was the television commercial (and I embellish here) "if you've died as a result of taking Humira, call 1-800-BAD DRUG now!!" Well, not exactly the correct wording, but close. I'm 60 now, and yes, I'm frightened of the "what ifs?" I didn't respond to the initial dose of one shot per week, so two weeks ago, after having a Prometheus lab study, I was told to take a shot every week. Of course everything I get, from a hangnail to a bad hair day I blame on the Humira. "I'm eaten up with cancer...I have a tumor the size of a basketball in my brain...." You get the picture.
But, not to worry. You will be monitored very well. Anything you tell your "Humira Ambassador" will be duly noted, and you will have the opportunity to talk with a pharmacist every time you order. That's the way mine works. And of course you have your doctor. I am certain they do not take anything unusual that you might report lightly. They are extremely well versed in the side effects of a biologic drug.
I have to make light of it all. Otherwise, I think I'd lose my mind. I hope you don't take offense at it. Good luck to you. And oh, I take mine out of the refrigerator the night before and put it in the cabinet (where the cat won't play with it during the night). This way it gets room temperature and doesn't burn as badly going in (plus I've decided the left side of my belly seems devoid of nerves, so that's where I do it every time). I wish you good luck and keep us informed.
Jimmy
I'm virtually a virgin at this, lol. I've been diagnosed with Crohn's and UC for two years or so. I'm a science guy, having gone to medical school for a couple of years until I decided that's not what I wanted to do with my life. Having said that, I still read everything I can get my hands on about medicine.
When I first presented to my gastroenterologist, my diarrhea and pain was off the charts. He took one look at the film from the colonoscopy and said, "I'm putting you on Humira immediately." (the gentleman who did the colonoscopy in another town had put me on prednisone and something else that was worthless.) I CRINGED. All I could hear was the television commercial (and I embellish here) "if you've died as a result of taking Humira, call 1-800-BAD DRUG now!!" Well, not exactly the correct wording, but close. I'm 60 now, and yes, I'm frightened of the "what ifs?" I didn't respond to the initial dose of one shot per week, so two weeks ago, after having a Prometheus lab study, I was told to take a shot every week. Of course everything I get, from a hangnail to a bad hair day I blame on the Humira. "I'm eaten up with cancer...I have a tumor the size of a basketball in my brain...." You get the picture.
But, not to worry. You will be monitored very well. Anything you tell your "Humira Ambassador" will be duly noted, and you will have the opportunity to talk with a pharmacist every time you order. That's the way mine works. And of course you have your doctor. I am certain they do not take anything unusual that you might report lightly. They are extremely well versed in the side effects of a biologic drug.
I have to make light of it all. Otherwise, I think I'd lose my mind. I hope you don't take offense at it. Good luck to you. And oh, I take mine out of the refrigerator the night before and put it in the cabinet (where the cat won't play with it during the night). This way it gets room temperature and doesn't burn as badly going in (plus I've decided the left side of my belly seems devoid of nerves, so that's where I do it every time). I wish you good luck and keep us informed.
Jimmy
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TIR, I've been on Humira for 4 years now. Prior to that I took Remicade. After 4 years, I have normal scopes with no signs of colitis. I'm a big fan and have suffered no side effects. Initially I was concerned about the cancer warnings, but I quickly got past that. My 17 year old son has been on Humira for 2 years now and it has helped greatly.
I would discuss your fears with your physician to make sure it is right for you. As a drug, though, it has worked well for me. Good luck.
I would discuss your fears with your physician to make sure it is right for you. As a drug, though, it has worked well for me. Good luck.
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Ds is 12 he has been on humira for 4 years
T cell lymphoma
Risks
So for kids ( not adults) under 14 in the US
The risk of death
1 in 250 by car ( yet my kid rides in a car everyday)
1 in 1000 by drowning ( yep lots of swimming)
Odds of T cell lymphoma if you don't have Ibd -just average person on the street
2 in 10000
If you do have Ibd and take biologics plus immunosuppressants
6 in 10000
The risks of Steven Johnson syndrome from Tylenol , amoxiciilan is also there but we give those to infants
Risks vs benefits
Humira and other biologics reduce the risk of surgery
They give my kiddo a semi normal quality of life
Just keep in mind you take risks every single day
But no one is telling you just how much risk your actually taking
Good luck
Oh and Ds has been on biologics total of 5 years through elementary school
He is my healthy child barely sick
T cell lymphoma
Risks
So for kids ( not adults) under 14 in the US
The risk of death
1 in 250 by car ( yet my kid rides in a car everyday)
1 in 1000 by drowning ( yep lots of swimming)
Odds of T cell lymphoma if you don't have Ibd -just average person on the street
2 in 10000
If you do have Ibd and take biologics plus immunosuppressants
6 in 10000
The risks of Steven Johnson syndrome from Tylenol , amoxiciilan is also there but we give those to infants
Risks vs benefits
Humira and other biologics reduce the risk of surgery
They give my kiddo a semi normal quality of life
Just keep in mind you take risks every single day
But no one is telling you just how much risk your actually taking
Good luck
Oh and Ds has been on biologics total of 5 years through elementary school
He is my healthy child barely sick
Hi there! I'm thinking about taking Humira, just really afraid of the side effects (such as the T-Cell Lymphoma), and was wondering where you got the statistics for the odds of developing it? I've been looking for information and I'm having trouble finding it! Anyways hope all is well and best of luck!
TIR...I'm in the exact same boat as you. Not having Crohns as long as you have however the Entocort isn't/wasn't working so my GI was pushing for Humira. Without going into details there is a long list of my close family members that have all had cancer, some lucky and some not so lucky and so when I hear Humira the warning bells go off. I spoke to my GI about my concerns which I think she heard however believes that I would more than likely get cancer if I leave my colon untreated. So what to do, what to do? I told my doctor that I was stopping the Entocort and that I was NOT going to take the Humira, at least not right away. It's taken 8 weeks but I'm finally off the Entocort and have now moved on to medicinal marijuana. I'm waiting for my first shipment which should be end of this week. That's when my new adventure begins. I'm not sure how you feel about the natural approach but in my eyes, I need to try whatever I can before taking biologics. Good luck with whatever you decide and please keep me posted on how you're doing. God Bless!
Thanks for the reply, but yeah the risks of cancer just really get to me and I really want to try everything possible before going on biologics. Sadly medical marijuana isn't legal where I live. I smoked years ago and it really seemed to help, but only if you keep a very strict diet! I really wish I could receive it as a treatment option though! I haven't made up my mind on what I want to do yet, I'm seeing multiple GI's over the next month for second opinions and hope I can find something besides a biologic! Best of luck to you, feel free to keep me updated on your progress! God bless!
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http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
This explain risk vs benefits plus T cell lyphoma numbers
This explain risk vs benefits plus T cell lyphoma numbers
