Coming down off enbrel and IBD--Erin, this question is for you

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Date Joined Sep 2005
Total Posts : 1744
   Posted 4/5/2007 5:18 AM (GMT -7)   
I have been off the enbrel now for 1.5 months.  It's definitely out of my system, but the mtx and plaquenil are keeping things under control (I'm just a lot more sore and stiff).  The problem is that my lower GI symptoms are now back.  I have tons of lower GI cramping, and pain that is often localized on my lower right abdomen.  No diarrhea yet, but the cramping definitely feels like the big "D."  Additionally, I'm having ulcer-like symptoms (intense pain in the middle of my stomach that is eased by eating something little), and of course, the acid reflux.
Erin, how long did it take before your IBD kicked in after you stopped enbrel? Do you have upper GI symptoms too, or just lower?  I have an appointment with my GI doctor, but it's not until July.  I suppose I could always call him and he would be willing to give advice over the phone, but I want answers from him (he wasn't very forthcoming a couple of years ago), and I need to request that in person.
Again, please let me know how the Maker's Diet goes for you--I'm getting to the point where I might try it.
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan

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Date Joined Nov 2003
Total Posts : 7314
   Posted 4/5/2007 11:18 AM (GMT -7)   
El, when I started Enbrel, my GI was pretty sure that I'd see some improvement in my gut and he was right, the CD did quiet down. I still had minor symptoms, but no major flare during the 18 months that I used it.
It wasn't long at all before I flared big time after stopping it, but by that point, my joints were so much worse that I focused on them instead of the CD.
I had hoped for quicker and better relief from Humira than I've actually gotten. Sure, there has been some improvement in the enthesitis and therefore the pain, but I haven't been able to lower my pain meds and I just hit another really bad gut flare too.
I'd say that you should give your GI a call and talk to him about what other options there are for you. Perhaps just adding a simple 5ASA could help some.
Keah a.k.a. Wormy
 God helps those who help themselves.
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