Figuring Out What To Do – Part 1

It’s interesting when doctors agree on the diagnosis, but disagree on the cause and solution.  Interesting.  Frustrating.  I am not an experiment.

It is commonly believed that pancreatitis can be caused by:

  • Alcohol
  • Gallstones stuck in the common bile duct
  • ERCP (a procedure to check the gallbladder and pancreas)
  • Some medications
  • Heredity
  • Unknown

Given those options, GI quickly narrowed it down to gallstones or meds.  They did an EGD  and an MRCP, and determined that gallstones are not  the cause of my pancreatitis.  That leaves meds, so GI believes that sulfasalazine is the cause, and therefore had me discontinue the ssz.

My rheumatologist was then consulted, and has a very different view of the situation.  Her professional opinion is that ssz does not  cause pancreatitis (and all the RA patients heaved a sigh of relief).  She tells me that the incidence is so very low that what it really means is that one person, at one point, was taking that medicine and happened to get pancreatitis, therefore it must now be listed as a possible side effect even though nobody believes there’s truly a causal relationship.  Instead, she mentioned that there’s something called autoimmune pancreatitis.  It’s rare, but she thinks that’s more likely than the ssz to be the problem.  The treatment for AIP is prednisone, and I had my attack right after finally tapering off the prednisone so that makes me wonder.  As happy as I was to finally be off the pred, I’d gladly take it again if it would prevent another attack of pancreatitis.

My doctors disagree on the cause, so they disagree on the treatment, and I’m stuck in the middle, in pain.

When I’m not taking sulfasalazine:

  • I can barely walk
  • I have decreased heat sensation in my fingers
  • my toes feel like they’re on fire

This is not a medicine I want to be without.  If someone lined up all my prescription bottles and told me that I had to pick one and only one, sulfasalazine is the one I’d keep.  I’m not particularly happy about being taken off sulfasalazine unless we’re positive that it’s the cause of this problem.

This isn’t something I feel I can sit back and wait on while my doctors duke it out.  I’m barely eating, my abdominal pain continues, and I want answers.

I do NOT want to be at the mercy of the GI doc.  As I comb back through my notes, I’m incredulous at some of the things he told me:

  • This could be caused by gallstones, so we’ll remove your gallbladder.  If you have another attack, then we’ll know that wasn’t the cause.  (Even after determining that gallstones were not the cause, he still wants my gallbladder removed.)
  • This could be caused by sulfasalazine, so we’ll stop that medicine.  If you have another attack, then we’ll know it wasn’t the medicine.

Seriously?  Do I look like a lab specimen?  We’ll just try an irreversible surgery on the off chance that it might help (even though abdominal surgery is a risk factor for future attacks of pancreatitis)?  We’ll discontinue a medicine that we stopped two years ago with disastrous results, even though the doctor prescribing that medicine doesn’t think it will solve the problem?  I’m having a little trouble with this approach.

With any luck, my rheumatologist will run the appropriate tests and do some research to see if AIP is the culprit.  If it is, then I can restart the pred and ssz, and all should be well.

If the answer lies elsewhere, then at least we know and can figure out a treatment plan – one that doesn’t require experimental surgery or a return of the PN.

In the meantime, I have to figure out what to do while my doctors are deliberating.


3 thoughts on “Figuring Out What To Do – Part 1

  1. Since it sounds like you’ve ruled out the surgery, then perhaps you should call in any refills left on the prednisone. Gosh Socks, I’m sorry you’re stuck between a rock and a hard place, and hope you can wiggle out quickly without too many scrapes. Hugs

    • Once I started reviewing my notes, I realized that the surgery is a separate issue. That’s part 2. Nobody is saying, “Your gallstones are causing pancreatitis. Remove the gallbladder and both problems will be gone.” They’re saying, “Oddly enough, the gallstones are not causing your pancreatitis. They’re two separate issues; you need to address both of them.” I see GI, rheum, and my PCP all next week. My rheumatologist and I will definitely be discussing a return to prednisone.

  2. Socks: I am so sorry you’re dealing with this. It’s hard enough to be a patient when your doctor(s) know the cause and have a clear path of treatment. My thoughts are with you.

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