Has anyone gone off Humira for a while and then gone back on successfully?

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Lisa430
Regular Member


Date Joined May 2007
Total Posts : 148
   Posted 3/6/2009 6:21 PM (GMT -7)   
I am thinking about going off Humira. I have gained 50 pounds since I have been on it, have tingling and numbness in my feet and legs that has been diagnosed as neuropathy, have constant headaches and sore throats and am totally exhausted most of the time. It took about 6 months for the Humira to kick in and even with that i am still having little mini-flares requiring Entocort. I still have to be extremely careful about what I eat (limited to a few fruits and only really well cooked vegetables) and I still have multiple BMs during the day, although they are usually formed, so no D. The weight gain is causing pain in my knees, shortness of breath all of the time, possible sleep apnea (getting tested soon for that) and just general misery about how I look. I would like to go off the Humira for a while, see if some of these side effects go away and consider going back on again if I have another really bad flare. I know that folks on Remicade generally cannot stop and then start because you build up antibodies I was wondering if anyone had had experience with stopping the Humira and then going back on it successfully. Thanks

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 3/6/2009 6:58 PM (GMT -7)   
I've skipped 2 doses for surgery, and had no problems going back to it, but haven't been off for any longer.
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05
Currently on Humira, Prilosec, Effexor, Calcium, Vit D, sublingual B12


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/6/2009 7:46 PM (GMT -7)   
My government forced me to go off it for six weeks (long story). Within 10 days I was ill; within 20 I was severely ill.

Once I resumed the med I started having larger injection site reactions. I am also starting to feel that it may not be working as well as it once did. (It will take a few more months before I know for sure.) I blame the interruption for the additional problems I'm now experiencing.

I'm sorry you're having this much trouble. It does sound as if you're having an unusually difficult time on this med, and perhaps it would be good if you coudl explore some other treatment options. Before you decide to stop, it might be a good idea to determine if there are any other meds you can take, as it would be dreadful if you lost this one medicine through your experimentation and then found that you were stranded, sick and medless.

Best of luck,

Ivy.
Co-Moderator Crohn's Forum.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/6/2009 9:05 PM (GMT -7)   
Ditto what Ivy said....
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira. 25mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Lisa430
Regular Member


Date Joined May 2007
Total Posts : 148
   Posted 3/7/2009 12:35 PM (GMT -7)   
Thanks for writing back. I have been on all of the other drugs, including Imuran, Methotrexate, large, long periods of pred and Remicade. I know I am sort of at that point of last resort, which is why I am struggling so much with it. I am not planning on doing anything until I see my GI- he is aware of all of these issues and says he doesn't have a good answer for me.

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 3/7/2009 3:22 PM (GMT -7)   
I've had an experience similar to Ivy's, and I also blame the "break" in medicine for it's ineffectiveness later on... but it was with Remicade for me, not Humira. I had a situation which postponed my remicade treatment for 3 or so months I think... long enough that I was NOT in good shape when they told me I could finally have more. It never did work the same after that. Nothing "bad" happened as far as reactions or anything... it just didn't work anymore.

Just my 2 cents. I hope you find the info you need to make your decision!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (loading doses 2-12-09)
Probiotics, Digestive Enzymes, and Prednisone


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/7/2009 3:43 PM (GMT -7)   
Lisa, where do you live? We may know of some other, newer meds, or some trials that may be able to help you.
Co-Moderator Crohn's Forum.


Lisa430
Regular Member


Date Joined May 2007
Total Posts : 148
   Posted 3/8/2009 3:24 PM (GMT -7)   
Ivy6- Northern Virginia. Thanks
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