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04-23-2013, 09:58 PM   #1
Stressed Mom
 
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Stopping Humira

My son had a right hemicolectomy last fall and started back on Humira a few weeks after the surgery. My question has anyone else stopped Humira and experienced side effects? He really wants to go drug free now that he is in remission and since he just turned 19 I want to still give him the best advice and guidance I can but have to respect his decision at the same time and also prepare him for possible side effects.
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Michelle

Son diagnosed with Crohn's March/03

Right hemicolectomy Oct 30/12

Currrently on Humira
Discontinued Aza Oct/12 (prior to surgery)
Discontinued Pentasa July/12
04-23-2013, 11:30 PM   #2
PsychoJane
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Well, well, well... I always feel it is a delicate subject to go and suggest to go med-free. Personally, I have been blessed with the luck of being able to be med-free most of the time I had to bear with this disease (14 years and counting). On that amount of time, I took medication at diagnosis (during 3 months or about while I was battling to just survived and medication caused me more than my share of side effect nearly killing me...) and for a year and a half(recently) due to the formation of fistula, hence, first recognizable flare since my colectomy in 1999. So yeah, I took the humira (which stopped working) until last surgery (a year ago) and since, with a great discussion with my physician, I stopped taking it afterwards.

It is always a risk to drop a anti-tnf as it is kinda increasing the probability of building anti-anti-tnf antibodies and therefore trigger a higher response of the immune system once the medication is reintroduced (if need is). So more chances of reactions and more chances for a treatment failure. So on this aspect it may worth talking to the GI and see if it is or not a good idea as far as this goes. For instance, I had trouble with antibodies, Humira had not only stop working for me but I was having major side effects from that too. At that point, it is a matter of weighing the good and wrong out of this whole thing. And I can completely understand the desire of your son wanting to go drug free and living life like everyone around. It's worth considering it.

My other point is; was he responding to AZA? he could possibly go back on that in case of another flare. Remicade could be an option too and others medication might be available in due time.

Also, I don't know what behavior had his disease, I know mine act up severely when it does but remain dormant for long periods... This is why I allow myself to do things this way. It might not be advisable for someone else.

I hope it helps a bit...

~J~
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Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

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04-24-2013, 01:15 AM   #3
Thermo
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I have started and stopped a couple of times, missed dosages and skipped some from being sick. I can't recall any side effects after quitting. But there is a nasty side effect from quitting...having Crohns flares.
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Diagnosed-1992 (Age 8) Regional Enteritis 555.0

Meds - Humira, B-12 Injections, Vitamin D, Iron, VSL#3

Surgery - Open Ileocolic Resection July 24, 2012 (44cm removed 17 inches including appendix)

My Advice: Find a good GI, Primary Doctor, Optician, and spouse and stick with them, don't be afraid of the Biologics and 6 MP's if you hit the disease hard at diagnosis you fight off the natural progression and have a better quality of life.

http://www.youtube.com/watch?v=PC2VyIxiWmk
04-24-2013, 06:28 AM   #4
Jimena
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I used Humira about 3 years and then decide to stop beacause i was in remission. FAILED big time. Never had perianal issues before and about 6 months after stopping Humira i flared big time, and still am, after two years. Big perianalissues (deep fissure from anus to rectum and possiple fistula) and rectum and terminal ileum inflammed. I started Humira again as soon as i had my symptoms again, but it haven't stop the flare up anymore, even wit loading dose. No mean to scare you, but this is what happend to me. Before stopping it, i was best shape in years! Feel like a normal, healthy person. Not anymore....
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Severe Crohn's since 2002. Tried every longterm medicine there is, Pentasa, Azamun, Remicade, Humira...
Temporary colostomy 2013 -> Parastomal hernia
Surgery, mesh, end colostomy 2014 -> deep wounds that didn't heal, three fistulas around stoma
Colon removal and ileostomy 2015 -> So far so good

And after every stoma surgery, nasty Pyoderma Gangrenosum around my stoma.
04-28-2013, 10:16 AM   #5
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PsychoJane: Thank you for the insight and your suggestions. We have considered going back to AZA and have made an appointment to see his GI in 2 weeks. This is such an unpredictable disease and can sure cause a lot of damage in a short period of time. Thank you very much for the information you shared with us and we wish you all the best also

Thermo: Thank you for responding and you are very right about the worst side effect of all!!

Jimena: I'm very sorry and really appreciate the warning, this is exactly what I am afraid of will happen to my son as well. We wish you all the best in getting this horrible disease back under control
04-30-2013, 01:06 PM   #6
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Hi Mom,

I had the same experience as Jimena. I felt great and decided to stop my Humira. I didn't realize at the time that the reason I felt so great was that the Humira was working great!

Unfortunately, often times a flare that is triggered from stopping a biological can be massive. And then re-starting the Humira again doesn't guaranatee the same stellar results.

I would tell your son to proceed with caution and really think about whether the risk is worth being "med-free".

Good luck!
05-09-2013, 10:33 AM   #7
RissaIUP2016
 
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I wouldn't go med free.. as soon as you stop taking your meds, or stop taking them regularly the symptoms are bad and you are flaring again.. its happening to me now.. i will never miss a doss of pills again. I am also 19 and wouldnt wanna do that.. even if he thinks the surgery would help.. id wait and go with what the doctor says.
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Diagnosed: October 17, 2012


Imuran 50MG
Started Humira 1/25/13
Surgery Coming December 2013


05-09-2013, 03:12 PM   #8
amrycrohns
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I have experimented with this very thing myself this past year. In order for me to stay in military I have to come off biologics. So I attempted to come off humira, Dr. gave me prednisone, Flagyl and Cipro, so as soon as anything went wrong I could get it under cotrol till I got more Humira. In my case it went wrong fairly quickly, and I had to take loading dose of Humira again. I do not think the Humira is working as well now as it did first go, I actually started it 3 times now. When I get some other things under control I plan to attempt again. Tobaco use, Anemia, and Diet.

I would defaintly discuss it with doctor who knows maybe he will be one of the lucky few that you read about going into remission 20+ years with no meds.
05-10-2013, 10:52 PM   #9
Scaryman
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That is one of the main reasons why I have been told pre-surgery in two weeks DO NOT STOP taking MTX and Humira. They'd rather handle a possible infection rather than postpone surgery due to bad inflammation. As well as your body not being able to have the same desired results from such a powerful Humanized protein (Humira). I'd tell your son that understanding that he wants off Humira to be free from the fatique and other side effects. But present your son with the following serious choices:

1. Stop Humira and deal with a eventual bad flare, and Humira not being able to work the next time.

2. the next drug your Doctor tries has worse side effects than Humira.

3. The flare might do more harm to the GI tract requiring another resection.

The point is Crohns is unpredictable and so darn Non-linear that while I get why he wants off Humira ( i have had some serious side effects myself.) I would NOT advise doing it unless it was a serious reaction.

Hope that helps.
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Diagnosed 2003
5-ASA- failed
Imuran-failed with a strange reaction-paralysis
Remicade- failed with infusion reaction.
Mesalamine-another failure
Entecourt - fail- no help.
currently on Methotrexate 25mg and Humira combo.
Folic Acid Supplement
Hyclosomine,Ultram,vicoden for pain as needed
Extended right Hemocolectomy 5/24/13 Univ.Of Chicago
11/7/13- small crohns ulcer at surgical site (active).
05-10-2013, 11:18 PM   #10
PsychoJane
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Hmm, Scaryman, it's rather scary staying on both those med and going to surgery... I had humira alone and I got the joy of dealing with a strep infection post surgery that let me deal with open wound for 2 months post-op... It's not tooooo safe... just saying. I was still on it because they were not able to schedule the surgery in advance so I've known it about 5 days prior and I could not get off the humira as suggested by my GI. He did mention that some people remain on it and go to surgery, so it seemed to be no big deal, but I find it rather scary. I mean, you catch the flu on these and it can be hell...
05-11-2013, 07:45 AM   #11
Scaryman
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Hmm, Scaryman, it's rather scary staying on both those med and going to surgery... I had humira alone and I got the joy of dealing with a strep infection post surgery that let me deal with open wound for 2 months post-op... It's not tooooo safe... just saying. I was still on it because they were not able to schedule the surgery in advance so I've known it about 5 days prior and I could not get off the humira as suggested by my GI. He did mention that some people remain on it and go to surgery, so it seemed to be no big deal, but I find it rather scary. I mean, you catch the flu on these and it can be hell...
I understand where your coming from but my surgery is being done at a place that specializes in crohns and has a world renowned facility. I trust them more than any hospital in my state let alone the entire south east. How long after sugery did you have those infections?
05-11-2013, 09:19 AM   #12
PsychoJane
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5 days post-op the wound broke open but I started having light fever at day 4 post-op I think. They just assumed that it was due to the fact I was a anti-tnf patient and that it was a normal response to the massive surgery I had, they thought it was "normal fever" from physical inflammation until the wound exploded if I may word it this way and that I ended up with a majestic dehiscence due to strept even if I had been on antibiotic coverage prior to surgery and till the general 48-72 hours after(Cipro+Amoxiclav before surgery and Ancef after).
05-17-2013, 07:58 AM   #13
BasedJawline
 
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For the people who stopped taking their humira did you just cold turkey stop or gradually wean off? Also did you have any other treatment plans for when you got off or did you just stop all together. I'm talking homeopathy, chinese medicine or even anabolic steroids etc or did you have no treatment plan at all when going off your humira?
05-17-2013, 03:06 PM   #14
kiny
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For the people who stopped taking their humira did you just cold turkey stop or gradually wean off? Also did you have any other treatment plans for when you got off or did you just stop all together. I'm talking homeopathy, chinese medicine or even anabolic steroids etc or did you have no treatment plan at all when going off your humira?
You can stop humira and remicade cold turkey after discussion with your doctor, there's no reason to wean off.

Anabolic steroids aren't going to help you with crohn's disease in any way, they're never used to treat crohn's disease, you probably mean corticosteroids.
05-18-2013, 10:07 AM   #15
BasedJawline
 
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You can stop humira and remicade cold turkey after discussion with your doctor, there's no reason to wean off.

Anabolic steroids aren't going to help you with crohn's disease in any way, they're never used to treat crohn's disease, you probably mean corticosteroids.
yes i know all about corticosteroids unfortunately and no, im talking alternative medicines because i honestly feel like im on the pay roll right now with the drugs I'm on from these western doctors. anabolic steroids reduce cortisol and increase testosterone. those with active crohns have too much cortisol and not enough testosterone so yes it would make sense that it helps crohns, though i cant find any information on the topic and i havent personally tried it yet but im definitely considering it as it makes sense and i feel the side effects will be less than humira. thankyou though, good to know i can stop cold turkey though i know im reliant on it right now until i can find a good alternative which will keep things in check.
05-25-2013, 08:27 AM   #16
my little penguin
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Anabolic steriods can cause liver cancer , cardiovascular disease, joint problems etc...
Please discuss the very real risks with your doctor
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05-25-2013, 09:30 AM   #17
amrycrohns
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Anabolic steriods can cause liver cancer , cardiovascular disease, joint problems etc...
Please discuss the very real risks with your doctor
Like anything there is also plenty of study's that cycling not abusing newer anabolic steriods could possibly be very healthy.

The Steriods that are mostly thought of with weight lifting, Deca and D-bol and other older drugs are not the same as Anavar and newer roids.
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