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Quit Humira - what happens now?

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Ulcerative Colitis
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Posted 4/19/2013 3:57 PM (GMT 0)
I have been (mostly) symptom free since starting Humira in January of 2011. I do have occasional bloating and pain, but no diarrhea or blood. I've been anemic since 2008 (diagnosis) and have other auto-immune symptoms (arthritis, chronic fatigue, etc.) but as far as UC symptoms go, I've had a lucky break. So I was taking Humira up until this past January (2 years) and then I decided to quit - cold turkey. So far I haven't had any problems, and I've also quit my Lialda in January. The truth is, the medicines got too expensive, and I began worrying about long-term problems with taking these medications. I make too much money to qualify for the patient assistance programs, but I don't make enough to be able to afford the cost of the medicines. That being said, I do not want to be on these medicines anyway.

My question is for any of you who have quit Humira for long periods of time. Did you have a flare the followed it? Were you able to successfully get off of the drug without problems? And if you did have a flare, did you just get back on the Humira? My doctor says the Humira will stay in my system for 6 months. I guess my concern is that once I hit the 6 month mark things might start to go downhill.

Thoughts?
Posted 4/19/2013 4:01 PM (GMT 0)
If it goes downhill after the biologics, then it's time for this.

http://commons.wikimedia.org/wiki/File:Small_pair_of_blue_scissors.jpg

;)

Posted 4/19/2013 4:02 PM (GMT 0)
Yes, after my last hospitalization (January 2011) the doctors said that the next step was surgery but I'm not ready for that.
Posted 4/19/2013 4:03 PM (GMT 0)
You need to get back on the meds asap. Here is my thread for reference: https://www.healingwell.com/community/default.aspx?f=38&m=2665530

You might be okay without humira, but there has to be some kind of maintenance regimen. Either way, please consult with your doctor. Lialda has a savings card that might help you out.

Please don't risk reflaring, as future flares get harder and harder to treat.
Posted 4/19/2013 4:06 PM (GMT 0)
I was considering getting back on the Lialda. I just really do not want to go back on the Humira.
Posted 4/19/2013 4:18 PM (GMT 0)
you're the man dude ! (at least i think you are)
Posted 4/19/2013 4:21 PM (GMT 0)
"you're the man dude ! (at least i think you are)"

Im the man, with the big banan'
(this line works better when said in franglais english french combined lol )
Posted 4/19/2013 4:39 PM (GMT 0)
What did your doctor's say about you quitting.

I am guessing you'll start flaring eventually but I hope not. If you are going to try anything like diet, probiotics, or fecal transplant I'd do it right away. From what I have heard they work better if you are in remission.
Posted 4/19/2013 4:44 PM (GMT 0)
My doctor said that he was alright with me quitting the Humira as long as I stayed on the Lialda. I think I better get back on the Lialda. I never know what kind of probiotics to take, or how many, and sometimes those get expensive too. For a while I was paying for the VSL-3 but I can't keep up with that price. As per diet, I just try to eat well, and I stay away from fried, greasy foods since that's the kind of stuff that always bothered me. I'm mostly vegetarian, and eat almost only organic foods.
Posted 4/19/2013 4:58 PM (GMT 0)
Totally understand about the meds...but I would def get on some kind of maintenance med (Lialda plus maybe rectals 2X/week-as shows longer remission that way). Hard to totally know what would happen, but let's keep the odds in your favor w/out the heavy meds.

BTW, Lialda has an assistance card
for $10/month. Call Shire and ask for one. It really helps.
Posted 4/19/2013 5:08 PM (GMT 0)
Lialda is generally regarded as safe and there's a savings card program for it. You can go here to register: www.lialda.com/lialda-pharmacy-card.aspx

I'm glad you are in remission, but please know that to stay well you need to adhere to your medications. Many people have made the mistake of going off maintenance meds only to flare back up, including myself.

Post Edited (StealthGuardian) : 4/19/2013 11:12:01 AM (GMT-6)

Posted 4/19/2013 5:24 PM (GMT 0)
Twice in my past I quit taking asacol and Humira and both times I flared.  It is nice to think you can get things under control if a flare occurs, but it seems that each flare seems to be harder to control (at least for me).  I went from left-sided UC to pancolitis.... Remember that you feel good now because your are on meds.

At a minimum I would stay on Lialda.  With issurance it is only $10/month (lialda card). 

Humira loses effectiveness when you start and stop it.  I know from experience. 

Work with you dr on a treatment plan.  If you both agree that meds can be off the table now, then at least you both will be prepared if things spiral out of control. 

Hopefully it all stays under control for you.  Some have had success with diet, while others need meds for success. 

 

Posted 4/19/2013 5:41 PM (GMT 0)
I don't think there is any knowing what will happen if you stop your meds but from my experience, symptoms eventually return. With my case of UC, I've had some very persistent inflammation that can be very difficult to control and I know if I didn't continue my meds, I would be asking for surgery down the line at some point. While I know surgery can provide a great outcome, I'd prefer not to have to go through all that and honestly i can't afford the time off from work or the coinsurance so it's just not an option. Better off ordering drugs from india/canada and hoping things stay calm.
Posted 4/19/2013 5:43 PM (GMT 0)
Ok, thanks everyone. I'll definitely start back on the Lialda tomorrow, but I'm going to stay off the Humira for now.
Posted 4/19/2013 5:45 PM (GMT 0)
On a side note, I ordered about 3 months of Generic Lialda (2 a day) from a Canadian Pharmacy for ~$100. That's really only $30 a month, not too bad!
Posted 4/19/2013 5:46 PM (GMT 0)
Yes, I'll definitely look into that!
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