View Full Version : My Doctor Dilemma

02-05-2008, 01:59 PM
After months of excruciating muscle and joint pain, profound fatigue and weakness, fever and chills, and worsening kidney tests, I saw an internist who promptly referred me to a rheumatologist. The rheumatologist started me on Prednisone 60 mg right away and within 24 hours, I felt great. At that time, I had 3+ protein and 2+ blood in my urine, but no casts. Serum Creatine and BUN were elevated. Dr. Rheumy wanted me to have a kidney biopsy done to determine which drugs would be most effective in treating the lupus.

By the time I saw the nephrologist, a couple of weeks later, my urine protein had dropped to 2+ and the blood was still 2+ with no casts. Dr. Nephro, an intense and passionate doctor, told me a kidney biopsy was not justified. Any information gained with a biopsy would not change the way he would treat my kidneys. Please understand this is my “Readers Digest Version” of his opinion.

When it became clear that a kidney biopsy would not be taking place, Dr. Rheumy decided to start me on CellCept so that the dose of Prednisone could be reduced. I was very anxious to reduce the Prednisone ASAP, so I agreed, despite the potential dangers of CellCept and the fact that we actually had no proof, aka kidney biopsy results, that it would be effective.

On my next visit with Dr. Nephro, he asked me why I was on CellCept. After explaining it was to reduce the Prednisone, he pointed out that without a kidney biopsy, we couldn’t know if CellCept would help. (More Readers Digest Version) It was overkill for some muscle aches and joint pain, a waste of time and money, and asked me how progress would be measured. I didn’t have the answer for that yet – had it on my list of questions, but forgot to ask last time.

As I prepared for my next visit with Dr. Nephro, I could sense a show-down coming. He entered the exam room and sat down, spreading my chart in front of him. He asked me the same questions as before. This time I had an answer for him – progress would be measured by my kidney function. Well, that wasn’t what he wanted to hear!

As we sat there, staring at each other, faces reddening and his arms moving in various directions to accentuate his words, he told me he couldn’t be a part of something he didn’t agree with. (Again, my Readers Digest Version) Perhaps I shouldn’t have mentioned that I had been told that the rheumatologist would be the one to call the shots. He then walked down the hall to call the internist to bring him up to date. I know this because I could hear the whole conversation from the exam room.

When I stopped at the check-out station, the secretary was impressed that the doctor had written prn (as needed) for my follow-up appointment. She said, “ You must be doing really well. He almost never writes prn.” I guess there is still hope. He didn’t write “NEVER”.

02-05-2008, 06:44 PM
First of all, how incredibly unprofessional to make you uncomfortable when all you want to do is get the right kind of care! This, unfortunately, does not sound unfamiliar to me. I experienced a similar 'hissy-fit' by a very well respected rheumatologist at the Univ. of Minn. who was offended that I had sought additional guidance from a team of doctors at the Mayo Clinic (my primary rheumatologist referred me to both of these places.)

This nephrologist clearly had a problem with the course of treatment your rheumatologist determined. If so, then THAT'S where he should've directed his frustration - not at you, for goodness sake.

I think, for most of us, our rheumatologist is the one to act as coordinator of our health care - someone has to keep all the balls in the air, and the patient is generally not qualified to make a diagnosis or treatment decisions!

I'm so sorry you have to worry about something like that - you have enough to worry about without dealing with a 'pouty' doctor. Grrrrrr

So, will you ask your rheumatologist for a referral to another nephrologist? I certainly would - and I would be very frank about your experience.

sick n tired
02-05-2008, 10:58 PM
Hi Peggy james,

What a jerk doctor.........It is time to lose the jerk. I hope that there are other nephrologists where you live who have outgrown their terrible two's. grrrrr
Just like Jody, I have experienced the some of the same things, It seems there are doctors who want to run the show and do not want to have to listen to the ring master. too much pride if you ask me.

I hope that you are feeling better...and get a doc who can help you,


02-06-2008, 09:11 AM
I think my picture is a cat. Whatever she has on her head reminds me of one of those old fashioned leather football helmets. I could really relate when I saw her and it made me laugh! I feel like she looks - determined to deal with all this, even if it means a few skirmishes and bumps and bruises along the way.

Unfortunately, there is only one group of nephrologists in the small town where I live. The next closest nephrologist group is an hour and a half away. I've made an appointment with my internist for next Monday to see what he suggests. Maybe he can get my case transferred to one of the other doctors in my hometown group. These things can get to be so political. I don't want to "cut off my nose to spite my face", but I'm not going to put up with being stuck between two doctors who can't work together. I'll let you know how it works out.

02-06-2008, 07:16 PM
Peggy -

I just had a similar experience with one of my physicians (who was not my rheumatologist). I promptly FIRED him, after letting him know that he was both wrong and rude. I made a decision a long time ago that I was no longer willing to pay for either of those talents.

This is YOUR life and YOUR health we are talking about. Get rid of the jerks. You deserve better.

Wishing you well this evening.


02-06-2008, 08:49 PM
Peggy - I personally LOVE your picture, and I'm not even a cat person!!!

I think it's hard when you have Lupus Nephritis and need to really rely on two doctors for your treatment. In my situation, my Rheumy is very hands off about my kidneys. I thought this was weird at first, because I moved from a place where my Rheumy didn't even refer me to a Nephrologist, because it was so obvious what was going on and that I needed Cellcept (or Cytoxan) that it wouldn't have mattered what a kidney biopsy said. So, it seems every community deals with this differently, and yours seems to have a bit of a territorial showdown. These docs should really be communicating and coming to a concensus about the best course of treatment for you. It sounds like because there is such a discrepancy between what they think that a couple of second opinions by another Rheumy and another Nephrologist are warranted. My Nephrologist actually recommended that I get a second opinion, because he was leaning toward changing a course of treatment at one time.

I wish you the best of luck and as little Doctor drama as possible in the future!