Advice needed before seeing GI

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ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/11/2010 9:29 AM (GMT -7)   
I'm seeing my GI on the 25th and want to have a better idea of where I want to go with my treatment before I talk to him.  Other than a temporary/short-term flare 4 months back, my Crohn's has been in remission for 4 or 5 years.  However, my arthritis is getting worse.  I saw my rheumy yesterday and we are down to 2 options, as everything else has either not worked, hurt my stomach, or elevated my liver enzymes.  We are trying 1 of those 2 options now (another DMARD), but it takes up to 4 months to work.  The 2nd option is Enbrel for the arthritis and my GI would have to find something else to treat my Crohn's.  I've already asked him about this once and he said no because my Crohn's has proven hard to treat in the past and we've only been able to keep it in remission with biologics.  I understand not wanting to mess up the remission, but I can't continue on like this with the arthritis (been in a constant flare and on prednisone for over 1.5 yrs straight and it's only getting worse).  Here are some options I've thought about and discussed with my rheumy:
 
1. Asking again if I can do Enbrel and risk the Crohn's flaring up.
2. Switching to another local GI who can get Humira approved weekly to see if that helps.  My GI says he can't get it approved weekly but I've talked to another who can.  I hate to switch docs though, as my GI has Crohn's himself and understands.  Also, the Humira bi-weekly doesn't seem to be helping at all this time around so my rheumy doesn't think it is going to help.  Also, she said studies are showing that weekly doses aren't helping any more for RA patients.
3. Make the 2.5 hr drive to Vanderbilt.  Rheumy said she would give me a referral to there or to the Cleveland Clinic, but that's more like a 7 hr drive. 
4. Stick it out for 4 more months to see if the leflunomide is going to help and, if not, then go to Vanderbilt.  Rheumy said she thought it was worth a try before going to another dr. but did say a fresh set of eyes may help things.  Also, everything else has raised my liver enzymes, so leflunomide probably will as well. 
 
What would you do...leave a GI who has Crohn's himself and a rheumy you love and go to Vanderbilt, or go with one of the other options listed (or something else entirely)?  Thanks so much for the suggestions.
 
 
 
Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 8/11/2010 12:57 PM (GMT -7)   
I honestly can't say...this from me, who is up to 2x/Month on Cimzia, and it is becoming less effective eyes I hope you find something to relieve your symptoms...

You may even think of just a 2nd opinion type of appointment, don't get rid of anybody else, but see what another has to say...see if it is worth it...
"The earth laughs in flowers"

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/11/2010 7:07 PM (GMT -7)   
Hi Zena,
I agree with becoming undone, I would get a 2nd opinion without ditching your other Dr.s and then go from there.
Sorry you are having to go through all this.
Take care
Jo
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/12/2010 6:04 AM (GMT -7)   
Thanks for the replies.  I thought about asking my rheumy if she would just consult with the other drs in her office first and see if they have any other ideas.  I'll ask my GI if he knows of any other good rheumys he could consult with. 

Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/12/2010 6:53 AM (GMT -7)   
I just looked online and found where the Cleveland Clinic (ranked #2 in both GI and Rheumy) will give you a second opinion without you having to go there...you just send them your medical records.  But, this costs about $600 (or more if you need pathology involved) and can't be billed to insurance.  Has anyone gotten a second opinion this way and, if so, was it worth the expense?
Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 

pen1
New Member


Date Joined Jan 2009
Total Posts : 18
   Posted 8/15/2010 10:25 PM (GMT -7)   
Remicade every eight weeks along with imuran is helping both my severe CD and my newer problem of inflammatory arthritis from crohns. The remicade works immediately and I feel wonderful for six weeks when I start to get stiff and inflamed all over once again. It is a cycle but for six weeks I feel normal. You don't mention remicade but it seems to subdue all my inflammation even my eyes feel less dry. Good luck! I would definitely keep the great GI and the Rheumy. I doubt they mind you are checking other options as they must know the pain we feel when flaring. My GI doctor fought hard to keep me alive a few years back and lately fought for my remicade when my insurance decided to deny me. A great Doctor is a Godsend with Crohns.

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/16/2010 5:24 AM (GMT -7)   
penwestern, thanks but I can't do Remicade.  Did it for a little over a year when I was first diagnosed and had to stop due to allergic reactions and lost of response.  GI says we could maybe try it again, but my Rheumy thinks it's risky and I can't find anything online to support being able to take it once you've had reactions.  I'll talk to the GI next week and see what he thinks is the best option. 

Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 
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