Question for The Veterans

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Regular Member

Date Joined Aug 2007
Total Posts : 349
   Posted 9/18/2008 3:06 PM (GMT -7)   
So at what point do you go off of medication. Tyabri has kept me in remission but at what point if ever can I go off of tysabri?
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 180lbs). Off predisone and on tysabri 4/3/2008

Veteran Member

Date Joined Jan 2007
Total Posts : 3200
   Posted 9/18/2008 3:45 PM (GMT -7)   
Good question, and one that has crossed my mind, but I don't know the answer....

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 9/18/2008 4:26 PM (GMT -7)   
I was under the impression that you had to stay on medication for life. I know I will anyway. It just depends on which medication it is I suppose..
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 9/18/2008 6:21 PM (GMT -7)   
I'm currently in the "process" of abandoning western medicine, but I think if you want to get technical about it - western medicine abandoned me. Remicade, after years of being my wonder drug, has stopped working. I have refused my Humira. It was a HUGE decision not to continue the Humira, and a scary one. Part of me is terrified of not having a "back up" medication plan, but I just can't do it anymore.

So, at what point do you go off of medication? A.) when the med decides it doesn't like you anymore, or B.) when YOU decide, for better or worse, that you won't take the med anymore. I wish I had a nicer answer, but that's the view from where I'm sittin'.

P.S- I'm having success with a gluten-free diet, and I do take probiotics and digestive enzymes. I'm hoping that those, along with quitting smoking and healthier daily habits will do the trick. We'll see soon enough!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 9/18/2008 6:44 PM (GMT -7)   
I was under the impression that Tysabri, like the other biologics, is a maintenance system. It treats you while in therapy, but once off, your body could go back to the situation before. I suppose it's all chance, though. You know the history of your disease. If it's been constant, then I would imagine it will attack again. If you've had periods of remission without meds, maybe you will hold the remission for a while.

Personally, I am considering a "drug holiday" due to the nature of Tysabri... It's never put me in complete remission, so...
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 9/19/2008 4:19 AM (GMT -7)   
meds for life
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Veteran Member

Date Joined Jan 2003
Total Posts : 1928
   Posted 9/19/2008 4:32 AM (GMT -7)   
At my last GI appt, we discussed the possibility of my going off Humira next year. He mentioned that some new research data are showing that this is feasible. Humira is my only crohn's med, other than B12 shots and vitamins.

On an aside, I've been known to stop my meds for periods of time. The longest I went was 6 months without sx returning. I think some people can pull it off. I don't recommend doing it yourself though :)
"Only the meek get pinched...the bold survive."

Regular Member

Date Joined Aug 2008
Total Posts : 320
   Posted 9/19/2008 9:31 AM (GMT -7)   
I tried weaning myself, very slowly off Azathioprine. It didn't last long! By the time I managed to cut down from 3 pills to one, I was beginning to flare. Went right back on and doubt I'll look back.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
When I am weak, then am I strong

Veteran Member

Date Joined Mar 2007
Total Posts : 1642
   Posted 9/19/2008 12:37 PM (GMT -7)   

I have seen so many people say they went off meds while feeling well then ended up with obstructions and surgeries because damage was being done even they felt fine.

I agree with MMMNAVY

MEds for life....



Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and Clonazepam 


Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 9/19/2008 3:08 PM (GMT -7)   
Meds for life here too.
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure). Tapered off prednisone a month ago!

Veteran Member

Date Joined Nov 2005
Total Posts : 1340
   Posted 9/19/2008 3:33 PM (GMT -7)   
I agree meds for life, but sometimes you can switch to a milder drug to maintain remission. I maintained on 6mp for several years, but then dropped down to just Pentasa and was still able to maintain remission. (of course I am abandoning my own advice and am off the Pentasa to breastfeed knowing that it may mean another layer of scar tissue to once and for all close my ileum)
Currently in remission!

Veteran Member

Date Joined Mar 2006
Total Posts : 1354
   Posted 9/19/2008 5:15 PM (GMT -7)   
Yeh, meds for life for me also :(
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