Choosing a Rheumatologist to Treat My Rheumatoid Arthritis and Limited by My HMO Insurance Has Not Gone Well... Two Doctors, Plus Embrel, and I Still Hurt.

You never know how one mishap will affect you. An accidental fall, two years ago into a neighbor's sunken living room changed my life. After a long recovery from a broken arm, frozen shoulder, and RSD shoulder hand syndrome, I was still having trouble with my hands. My primary care doctor referred me to a rheumatologist who accepted my HMO insurance and was about a half hour away. She didn't know this doctor personally, but knew his daughter.

As soon as I got home I Googled said doctor, and I was impressed. Doctor M. had written several books on Arthritis, and had an impressive web site. Also, it was written that he was also voted one of Florida's best physicians. He sounded OK to me. I also checked out "Rate Your Physician"....where he was a 3 out of a 5, not great, but not that bad. I got my referral, and made an appointment.

One soon also learns that the person who answers the phone in the doctor's office has tremendous power. I call her (it's usually a woman) the "Gatekeeper." She controls your access to the doctor. It is she who decides if your problem is serious enough to see the doctor immediately, or if it is something that can wait a few days. If you want to speak to a nurse or doctor, she puts you on a list and you wait. There are no special medical educational requirements for this position. A GED is sufficient.

My first appointment with Dr M did not impress me. The office was old, shabby and crowded. Patients were seated in the office as well as out in the hallway. After an hour's wait I was directed to a small examination room where I waited another 15 minutes. Dr M arrived. He had no explanation for the delay. He looked at my hands and told me to come back in 2 months. He spent about 8 minutes with me and hurried off and I paid my $50 co-payment.

During the next 2 months both my knees started to swell. At my next appointment and the hour's wait, Dr M took X-rays, drained fluid out of both knees with a large needle, and gave me cortisone shots. He prescribed pain killers and prednisone. He said I had arthritis. My knees never got better and I returned a few times for the same procedure. I never got well and started feeling pain in most of my joints. I developed flu-like symptoms, fatigue, nausea and lost weight.

Eventually I could not even get out of bed and experienced severe pain and vomiting. My son called Dr M's office and was told the triage nurse would call back. I was on the list. She also said if we wanted to speak with the doctor, to have a credit card handy...since there would be a $25 fee.

No one ever called back, even though we kept calling. I ended up going to my health center where my primary care doctor sent me to the hospital where I spent 5 days. I was diagnosed with severe Rheumatoid Arthritis. Rheumatoid Arthritis (RA) is the "bad" kind of arthritis. It is a chronic, auto- immune disease sometimes resulting from trauma, like broken bones. The exact cause is unknown. Symptoms are pain and swelling in the joints, stiffness, fatigue, fever and weight loss. It can result in permanent disability. The only good thing is, that it can go into remission. The other kind of arthritis, Osteo Arthritis, is caused from wear and tear on specific joints.

After my experience with Dr M, it was time to choose another doctor specializing in RA. Once again I got a list of rheumatologists who accepted my insurance. I chose one, Dr L, whose office was nearby and who I thought was a woman. He had one of those androgynous names like Pat or Fran. I Googled the name and again checked out "Rate Your Physician." He was also a 3.

I made an appointment. His office was nice, the office staff was pleasant and there was only a 10 minute wait. Dr L seemed interested and told me he was sure he could help me. The clue to stopping RA's symptoms is to find the right combination of drugs (a magic cocktail) to put the disease into remission. Unfortunately, it may be 6 months to a year before one sees any results from some of these medications. There are all sorts of drugs, old and new. Dr L thought I would be a good candidate for Embrel, a fairly new biologic drug.

I was given a nice travel bag with literature, a CD, and assorted goodies. Dr L and his nurse seemed especially pleased that I might take the Embrel route. Dr L asked if he could tape an interview with me describing my experiences so far with RA. I obliged and we made a little "infomercial."

I do realize that pharmacy companies woo doctors to prescribe their product. Once, while waiting to see my primary care doctor at noon time, the door opened and food carts delivering lunch for the staff were pushed in, followed by a perky sales rep. The receptionist told me this happens regularly. Pharmacy companies hold promotional contests, and reward doctors and their staff with trips, dinners etc. I would bet the farm, Embrel does this also.

Encouraged by Dr L, I decided on the Embrel, despite scary risks and side effects, ranging from infections, cancer and death. We were to pay the first $2500 and then our insurance would pick up. My husband and sons learned how to give me the once a week shots, and I was in the program. Sadly after three weeks I developed heart palpitations and that was the end of the Embrel. Dr L seemed disappointed; but after stopping the Embrel, the palpitations stopped. Why do I have the feeling that if one doesn't do well on the "drug of the month" program, the doctor loses interest?

Meanwhile, I found an excellent on-line RA support group on the Daily Strength Web Site. Sufferers recount their experiences and rate their medications. I have learned much from this site, and have much to talk about during my appointments.

I was put on various medications and supplements which necessitated urine and blood lab tests every six weeks. When my first lab tests came in Dr L said every thing was normal. On my way out of the office, the nurse handed me a folder containing a copy of the tests. I took it home and left it on my work table. I forgot about the tests until a month later when I noticed the folder and decided to take a look.

The test sheet was easy to understand. My numbers were listed next to the normal range numbers. When I came to occult blood in the urine, my test was positive and noted in dark print.

I called Dr L's office and asked the nurse about blood in the urine on my test results . She said that they don't treat blood in the urine, and I would have to ask my primary care doctor about it. I asked why they did not tell me about the abnormal test. She said again, to talk to my primary care doctor.

I especially worry about kidney problems since my mother died from kidney cancer. I contacted my primary care doctor who referred me to an urologist. After tests and x-rays, I was found to have a large struvite staghorn stone growing in my right kidney. This type of stone is infectious. It can cause renal failure and death, and the stone must be removed. Within three weeks I was operated on. The procedure is called percutaneus nephrolithotomy where a drill type instrument is inserted into the kidney from the outside, and grinds up the stone. The remains of the stone drain out through a hole made in the patient's back. This process involved 5 days in the hospital and 2 weeks of visiting nurse care, plus recuperation.

When I returned to Dr L, the rheumatologist, and told him of my experience and how I was the one who discovered the kidney problem on the lab test report, not him, he acted like a kid in the principal's office. I did tell him in the future, we will go over all my reports together. He did not offer any excuse or apologize.

I didn't change doctors again because frankly, I do not have the energy to go through the process. Thanks to Daily Strength's RA support web site, I stay pretty well informed and Dr L does listen to me. It's easy to get an appointment. He orders my meds on time and answers phone calls promptly.

A few weeks ago I needed his signature on a disability insurance form. Formerly, his nurse just used his signature stamp on it and I was free to go. This time, I was told there would be a $75 charge......No credit cards accepted, only cash or personal check.

Sources:

Personal experience

Source....Personal Experience