Advice needed before seeing GI

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.

 

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

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?

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.