stuck in the middle

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bookgal77
Regular Member


Date Joined Jul 2009
Total Posts : 83
   Posted 11/12/2009 11:36 AM (GMT -7)   
Latest problem --- Crohn's is acting *okay* -- not great, blood in stool, but no diarrhea and no excess trips to the bathroom. Some cramping, some food issues, but better than it's been lately.
 
However, my joints are going CRAZY! Hard to walk, can't straighten my right arm out at all due to extreme elbow pain, knees hurt, feet hurt, hands hurt...basically inflammatory arthritis in full effect. Sed rate is 60...highest for me was 94 but still way above normal.
 
Been on prednisone since Feb. 09 - need to get off of it soon...bone density scan showed osteopenia (precursor to osteoporosis). Rheumatologist wants to put me on Humira to help the joint pain - says it would also help the Crohn's. But wants my GI doctor to say it's okay for me to take it before he does so. Called the GI, who wants me to come in for a "discussion" because he's against doing Humira.
 
Is it wrong for me to think they should just talk to each other, instead of bringing me in to talk about it. Their offices are LITERALLY next door to each other!!
**32 year old female; Diagnosed with ulcerative colitis in 2001; diagnosis changed to Crohn's disease in 2009 (but still only impacts colon)
**Asacol (4800 mg daily), 6-MP (100 mg daily), Prednisone (10 mg daily...for a few more weeks), Nexium (40 mg daily)
**Previous meds: Colazal (allergic); Flagyl (off and on for rectal inflammation); Rowasa (enemas only when needed); various pain meds (but luckily none lately); iron IV infusions (when hemoglobin gets low)
**Thankfully only two major flare-ups...2001 and 2009. Hoping to have another 8 years in between the next one (sadly, I do know there will be a next one).


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 11/12/2009 11:52 AM (GMT -7)   
Can't they do a conferance call?  Also, why is your GI against Humera?
 
I think something is up as it seems like a lot of people lately are having joint pains..myself included.  I am starting to think it is something environmental and not Crohn's related. 
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 11/12/2009 12:10 PM (GMT -7)   
JavaJay maybe it could be the change in season? I always find that I get stiff and am more likely to have a joint flare in colder months

Bookgal I know what a pain it is trying to get your GI and rheumy to liase especially when it comes to deciding treatment! I'm surprised you GI is against Humira but maybe he'll have some options for you? See if you can arrange a conference call like javajay suggested, otherwise it could take a while to get sorted if your having to chase one then the other and you shouldn't have to suffer longer then necessary!
 
 


bookgal77
Regular Member


Date Joined Jul 2009
Total Posts : 83
   Posted 11/13/2009 2:27 PM (GMT -7)   
An update:

I went to see the GI today, and it actually went much better than expected. When I got there, he did get the rheumy on the phone for a conference call. He is worried about the long-term implications of Humira, but agrees with me and rheumy that we need to get me off of steroids because of the noticeable damage they are doing.

And the really good news is he is getting me a consult with one of the top GI doctors in the area (if not the country) -- Dr. Stephan Targan at Cedars-Sinai in Los Angeles. The guy literally wrote the textbook on IBD, so I know he's seen it all and will be able to come up with a long-term treatment plan for me.
**32 year old female; Diagnosed with ulcerative colitis in 2001; diagnosis changed to Crohn's disease in 2009 (but still only impacts colon)
**Asacol (4800 mg daily), 6-MP (100 mg daily), Prednisone (10 mg daily...for a few more weeks), Nexium (40 mg daily)
**Previous meds: Colazal (allergic); Flagyl (off and on for rectal inflammation); Rowasa (enemas only when needed); various pain meds (but luckily none lately); iron IV infusions (when hemoglobin gets low)
**Thankfully only two major flare-ups...2001 and 2009. Hoping to have another 8 years in between the next one (sadly, I do know there will be a next one).


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 11/13/2009 2:31 PM (GMT -7)   
Congrats and good luck.  I know it is hard to get a good GI...and if your gonna see the best out there..man your lucky.  Let us know if he has any secrets for fighting this disease.

36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009

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