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.

Prior Authorization for Meds

Insurance companies – those paying out money – understandably want patients to use the least expensive treatment possible.  If the money was coming out of my own pocket, I’d definitely want to try a $20 treatment before shelling out $100 (or the $80 drug instead of the $2,500 drug).

When a rheumatologist writes a prescription for a biologic medication, it’s expected that the insurance company won’t authorize the pharmacy to fill the script without first making sure that less expensive treatments have proven ineffective.  When I was first prescribed Enbrel, that prior-auth worried me.  I’d heard from others about insurance companies dragging their feet and taking an excessively long time while patients sat and watched their fingers and toes become permanently misshapen.  That worry was needless because everything went quite smoothly – it took two days.

Since then, I’ve changed pharmacies, insurers, and biologics, and discovered that things don’t always go that well.  It would be nice if step one was for the doctor’s office to fax a form to get the process started with the insurer.  Unfortunately, different insurers have different paperwork requirements, and it’s not realistic for a doctor to have on-hand the forms required by every insurer.  It would also be nice if insurers – once they received information – dealt with the information promptly, but that doesn’t always happen, either.

I’ve learned so much about the way the procedure works – or doesn’t.

The first step is to make sure that the doctor is looking at an accurate record of past treatments.  If you’ve ever changed doctors, there’s no guarantee (even if you provided all the information) that the information made it into your chart in the right format/location for your doctor to find that info when completing paperwork for the insurer.  My rheumatologist looks at her prescribing history to determine how long patients have been taking a specific drug, so she hadn’t taken into consideration the year+ that I’d taken meds prescribed by someone else.  It’s was a simple matter to add that information to the drug list so that it’s easily visible, but we had to first recognize it’s an issue.

The second step is to not dawdle in taking the script to a pharmacy.  The sooner your pharmacy gets the third-party reject, the sooner things get moving.  You can wait to contact the drug company for activation of a patient-assistance card until after leaving the prescription at the pharmacy.

Third, patients need to know how their insurer handles PA’s.  This, I’ve discovered, is key.  Some insurers want the pharmacy to contact the doctor, and some insurers want to do it themselves.  Find out who sends that the fax your doctor, and see if there’s anything you can do to hurry the process along.

One Friday I went straight from my doctor’s office to the pharmacy with my new prescription.  Ten days later I still hadn’t heard anything, so I phoned the insurance company to find out if there’s any way to speed the process up.  When the doctor prescribes a med to be taken every two weeks and provides a sample for the first dose, it’s ridiculous for the insurer to wait more than three weeks to process the paperwork to get the patient those subsequent doses.  That’s how long it took last time, and I was determined that this time would be different.

One would think that when the insurer tells the pharmacy that a PA is needed, the insurer would start working on it right away.  Not so.  My insurer could have – and should have – contacted my doctor promptly on Friday.  It would be incredibly easy to program the computer so that a pharmacy reject would trip a flag; the computer would then automatically (immediately) fax a form to the doctor’s office to begin the paperwork process for approval.  Instead, it’s a cumbersome process handled by snails, and my insurer didn’t even contact the doctor’s office until the following Wednesday.

The staff at my doctor’s office was expecting the insurance forms and returned them promptly; insurance logged receipt on Thursday – then did nothing.  When I phoned (four days later), they couldn’t even find the forms.  At least my call alerted someone to be looking, so this time it only took 17 days to get my approval.

I’m so glad I phoned, because I learned that patients can help the process along.  I now have the direct phone number of one of the people who handles PAs for my insurance.  I hope to not need another med change, but if I do, I can call him directly to expedite matters.

And if I ever get rid of this cold, I can take that second dose.

Next!

This time last year, I felt great.  It was wonderful to finally feel good again. 

Things fell apart when I tried to reduce my number of meds.  Discontinuing ssz was a huge mistake, so I added it back in.  Next I discontinued the hcq.  The difference wasn’t as dramatic as it had been with ssz, but it definitely made a difference.  Sometimes I wonder if we should have just added it back instead of switching to biologic #2.

After a year spent singing the praises of Enbrel, I’ve been fairly silent about my second biologic.  Reason being, it didn’t work.  It’s a med that works very well for many people, so I don’t want to denigrate it unfairly.  In my treatment plan, though, it’s history.

Given my druthers, my rheumatologist would have written prescriptions to return to what was working a year ago.  She, obviously, knows all sorts of things I don’t, and thought it better to try a different biologic (maybe because just a couple months ago she had to argue with my insurer that biologic #1 wasn’t working).

I’ve now received my first dose of Cimzia of the cool looking syringe.  I’ll post a picture if my insurance company ever gets around to processing my pre-auth.  They took their own sweet time with the last one, and it drives me crazy that think they know better than my doctor what treatment is appropriate. (/rant)

I feel better already — likely due to the 20mg prednisone that I’ll have the pleasure of tapering off in a couple months.  On the plus side, there’s no need to finance a steroid injection in my shoulder.  The pred has already helped dramatically.

I have no desire to work my way through every single biologic on the market.  Let’s hope this one works better than the last.