Confused as to how to go about getting treatment/prescription refills for rare autoimmune disorder

About a year, I was diagnosed with autoimmune inner ear disease. A specialist ENT I saw recommended that I go on the immunosuppressant azathioprine (Imuran). I followed his advice and have been on it ever since.

Although I was really skeptical at first, the medication has worked really well for me. Before I took it, I was rapidly going deaf (lost about 90% of my hearing in one ear and about 40% in the other over the course of two months). The medication seems to have stopped the disease in its tracks. Not only have I had no more hearing loss since then, but I've also regained some of what I lost. So, I'm really happy on it.

I've also not had any side effects at all from the medication and am generally symptom-free.

The only problem I've had is that in the extensive blood work I have done every 3 months, my lipase levels always come back too high. Not really, really high. Just mildly to moderately elevated. The top end of the reference range is 60 and my results have ranged from 79 to 144, with the most recent test showing 119.

A couple of days ago, I went to the rheumatologist I had gotten to agree to monitor me and prescribe the medication (since each of the three ENTs I saw said that they were not qualified to prescribe it long-term and that I would have to find some other kind of specialist to work with) with my blood test results expecting a smooth visit and refil of my prescription. But this time, he gave me a hard time and said that he was a little concerned that my lipase levels were still high. He said that it might very well be that I'm just one of those people whose lipase levels are naturally high ... or it might have something to do with the medication.

Anyway, It seemed to me like he was threatening to discontinue my prescription if the lipase levels are still too high. At the same time, he couldn't articulate exactly what he was worried about. It seemed to me like he was just worred about the unknown. I know that high lipase is generally indicative of pancreatitis, but pancreatitis is not a subtle disease -- there are generally very obvious symptoms associated with it.

I could go on and on churning things around in my mind and spilling them out onto the screen, but what it boils down to as far as I can see are two risks. On the one hand, the medication might be causing some kind of inflammation in my pancreas (or elsewhere) that might or might not be serious now or long term. On the other, if I go off the medication, I run the risk of further hearing loss.

I am terrified about the prospect of going deaf, but not that worried about my pancreas. I would much rather take the risk and continue with the medication. So, if my lipase is stil elevated and my doctor doesn't want to refill the prescription, how do I convince him that I'm willing to take the risk. Or if he won't find another doctor who will? Is it normal to refuse to refill a prescription for so little? Or is this so standard that I'm unlikely to find another doctor to do so?

Also, how do I go about finding another specialist. It took me a pretty long time to find this guy. My ENTs told me that I had to see someone else, but they have no one to refer me to and when I just cold called other rheumatologists (because they have experience prescribing and monitoring the medication I'm on), most of them said they wouldn't take me on as a patient because they have absolutely zero experience treating this condition.

BTW, I know that there are a few great clinics in the U.S that offer coordinated care for AIED, but unfortunately they are not in my state and our insurance only covers medical care within our state. Also, we simply cannot afford treatment without insurance. I did call the Mayo Clinic to ask them about their rates and they insisted that I pay $5,000 up front merely for a first consultation.

Thanks for any and all suggestions.

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