Has anyone quit biologics by choice?

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Regular Member

Date Joined Aug 2004
Total Posts : 102
   Posted 8/18/2009 3:42 PM (GMT -6)   
Hi everyone!  I was on Humira for a year before I started to get lupus symptoms.  I was switched to Remicade & have been on it for the last 8 months.  It doesn't seem like it's making much more a difference over the old school medications, except now I'm starting to get the same symptoms I had on Humira.  I also recently developed bronchitis, had a strange unexplained swelling & pain of my jaw & once had to stop wearing earring for about 4 months due to recurring infections, not too mention having to buy new clothes every 2 months due to weight gain.  Has anyone told their doctor they didn't want to use biologics any more & if so, how did they take it?  I'm not sure if my doctor will be too receptive. 

Veteran Member

Date Joined Jan 2005
Total Posts : 1709
   Posted 8/18/2009 4:18 PM (GMT -6)   
I'm sorry you're having issues with your meds, it's frustrating when we develop other problems because of them.

I did quit Remicade, but it was because I was having severe debilitating joint pain most likely due to antibodies. I'm currently going old school with sulfasalazine and it seems to be working for now. Ultimately, it 's your choice not your doctor's choice whether or not you continue on this therapy, you always have the right to say enough is enough. What other treatments have you tried? Talk to the doc and express your concerns, be very up front with him/her. If you do decide to stop Remi you probably won't be able to go back on it due to developing antibodies. On the other hand if your quality of life is better on other meds, then I personally would try alternative treatment.


Veteran Member

Date Joined Jan 2006
Total Posts : 3129
   Posted 8/18/2009 4:34 PM (GMT -6)   
I have not started biologics by choice....let alone quit them. I am afraid of the complications personally. I have a bad history with meds, so I just don't want to risk it.
That said, if the side effects you are suffering are worse than living daily with your disease, then you have to decide which is right for you. Make sure you explain all of the problems you are having to your doctor and why you want to quit taking the med. They may have other options for you.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....

Regular Member

Date Joined Aug 2004
Total Posts : 102
   Posted 8/19/2009 8:44 AM (GMT -6)   
Thanks for your responses. I think I am going to quit. At least I can control my gut by not eating, etc but there's no control over the joint pain.

Regular Member

Date Joined Dec 2006
Total Posts : 177
   Posted 8/20/2009 4:56 PM (GMT -6)   
I was on Remicade for almost a year and I decided to quit because I was having a lot of the same things you are experiencing- weight gain, infections in my piercings (which closed up completely), and also hair loss and some serious acne. My doctor did not support me in quitting and didn't think that my symptoms had anything to do with the Remicade. However... all of those things went away without the drug! Now I'm in a tough spot, though, because I'm flaring and I don't want to go back on biologics (even though they worked very well for my Crohns). It's something to think carefully about.... is it worth the side effects to feel better? Or, if you're like me, maybe the side effects are bad enough that you're willing to risk flaring again. It's even tougher without your doctor's support. Good luck in your decision making!
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