stopping humira before doctor's appointment

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Regular Member

Date Joined Jun 2009
Total Posts : 354
   Posted 8/9/2010 7:56 PM (GMT -7)   
Hi guys!
I'll start off with a short history of my meds. I was on Remicade for a year and few months. 8 months into the treatment I started feeling pains in my toes, it woke me up a few nights with tears in my eyes. One night it was horrible I decided to head to the E.R. I was told I had arthritis. Later on I found out my body was having to much anti bodies so it was attacking my joints. It made me crippled for 6 months unable to even open a bottle of water or walk. So we decided (Doct and I) to stop the med, 2 weeks later I was pain free and able to walk again. However my crohn's wasn't stable any more, ending up in the E.R twice a week. So we decided to go with Humira, I've been on it for the last year and since April (slowly) getting the arthritis again. In the last month I've gone crippled again. My doctor appt isn't until August 30th (in the mean time we're moving into a new house we just bought this weekend) I have 2 more injections left until the appt and every second week the arthritis is getting worse. So I just don't want to take it anymore, I know the doc will agree... but they are so strict on saying not to stop this with out the approval of your doctor. but if she agrees what's the point in taking 2 more injections!?!? I guess i just need support saying I'm not doing something stupid, unless of course that's what you think. Please just give me your 100% honesty.
Thanks so much in advance
Frustrated Tracy *sigh*
Tracy from montreal. Dx with Cd 7 years ago but un-Dx for 10 years. Meds currently taking;Imuran (1 and half tab daily)Humira (bi-weekly) pentasa, been on prent 4 times but horrible side effects doc wont use this on me anymore. Humira has put my CD into remission, after using remicade for a year and half which caused remi induced arthritis. I am currently (most days) arthritis free. Currently dealing with endometriosis.

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 8/10/2010 5:19 AM (GMT -7)   
Can you call your doctor and at least speak to some one in the office? Try to move the appointment up? There may be some options that you aren't aware of that you will eliminate by stopping altogether. Sometimes by premedicating or adding other meds in, it ups the effectiveness or counter acts the side effects. But if you just stop, you will have to do the loading doses all over again.

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Veteran Member

Date Joined Apr 2006
Total Posts : 1885
   Posted 8/10/2010 5:55 AM (GMT -7)   
Zanne's suggestion sounds good.
Even if you can't see the doc until the end of the month, isn't it possible for you to at least speak to him on the phone by calling and saying it's urgent you talk to the doc today because you're thinking of going off the meds?
I don't know how things work in Canada, but in the States we can usually get a callback from a doc within 24 hours.

Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 8/10/2010 8:46 AM (GMT -7)   
I would also call the dr. and tell him you can't wait until the end of August to ask this because of how you are feeling and the fact that you are moving.  I'm wondering if the Humira is what is causing the joint pain or if you hurt every other week because the Humira is wearing off.  It can cause joint pain in some people, but that's not real common, and Humira is also used to treat RA.  I was hurting 1 out of every 2 weeks because the Humira wasn't lasting long enough.  I wouldn't stop it and risk having a Crohn's flare when trying to move...maybe you can wait until you move to stop it.   
Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 

Regular Member

Date Joined Jun 2009
Total Posts : 354
   Posted 8/10/2010 9:51 AM (GMT -7)   
Hi guys!!
Thanks everyone for their quick replies. I've tried calling the doctor's office and I aways get 'if it's an emgeracy to go the E.R" this isn't worth waiting for 10 hours to hope she'll even be in the E.R.... the problem is my doc is the only doc at the hospital I go to (only gystro doc). So she's always busy...But I do try to call but always get the same answer.
All of my symtoms are exactly like what happen on Remicade, everytime I'd take an infusion the arthritis would go away for a week, then 3 weeks worth of arthritis (to the point where, when I had the infusion I was still crippled)
it's exactly what's happening, the humira is losing the effectetness every other week. But it'd only be a matter of a few weeks if I was to do the humira every week to lose the effectetness again.
I've read tho it is possible for CD patient's to gain to much anti-bodies and in the side effect of that is arthritis with humira.
I wasn't taking imuran when I was on remi, once I got off of it she put me on it and in 2 weeks it went away. SHe (doc) was hoping by staying on imuran while doing humira it'd prevent the arthritis... clearly it only work for a certain amount of time, and I refuse to take MTX (is there really any other med to take to avoid anti bodies with humira?!?!?!)
I was thinking too just wait until I see her after the move, but the arthritis is so bad I can't justify taking 2 more injections... I feel lost.
I did speak with the humira nurse on the toll free #, and she said if I did stop I could go back onto any time I'd like. So maybe stopping for awhile to see how my joints feel and how bad the CD gets. (it also doesn't help we're trying for a baby because of my endo and hoping to put it into remission)
Thanks again
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