mama whose curiosity knows no bounds

Posts tagged ‘rheumatologist’

Long, winding road – my lupus journey #11

It was a shock that my rheumatologist was leaving.  We established a good working relationship and everything went great. The letter also said that the health system would look for another rheumatologist and as soon as they found, I could see her/him.

But I lost faith somehow.  It is impossible to have a long-term working relationship with a specialist like a rheumatologist.  My area is too rural for any specialists (unless they are local) to stay put.  They leave for more urban, richer communities.

I’m a firm believer in long-term patient-doctor relationship.  For example, I stick with the same psychiatrist for my son for 7 years until he moved to the group home.  It took about a year to build trust to each other.  Maybe rheumatology is not as complicated as psychiatry, but I don’t want to see a new rheumatologist every year or two.

I decided to seek a rheumatologist in a large city, about 1.5-2 hour drive from my house.  I searched very hard on the web, reading reviews about the doctors.  And I found a very well reviewed female rheumatologist in a specialty clinic.  My thinking was that if it was a specialty clinic in such a large city, the chance of her leaving office would be low.  I called the clinic and made an appointment.

The first appointment was a dissapointment. Again, she didn’t examine me physically.  Just listened to my history and medication.  I brought the blood test result at the previous clinic.  She even didn’t look at it.  She appeared indifferent and somewhat cold. But she changed my meds. First she increased methotrexate to 20 mg and then tapered down prednisone to 2.5 mg every other day.  This change worked.  Also, she added etodolac (Lodine) to curb the pain.  I felt more energy despite decreasing prednisone.  After all, I might have made a right decision to choose her despite her cold attitude.  Maybe that’s an urban thing.  I also thought that she mostly saw RA patients and their symptoms might be a lot more severe than mine.  With previous rheumatologist, I saw her at least every three months but the new clinic, lupus patients are seen every four months.  And previously I usually had a blood test 10 days before the appointment so that the doctor knew the most recent data, but the new clinic, blood test is done at the visit, so at the time of appointment, the doctor has to work with 4 month old data and my oral explanation.  Still, it seemed working.

The second appointment, I was happily reported that higher dose of methotrexate, reduced dose of prednisone, and etodolac are all working.  During that time, my right elbow pain was getting serious and I asked what is wrong. She (finally) touched my elbow and the verdict was “tennis elbow”.  I was like, “really???” but she suggested to buy tennis elbow brace and gave me a sheet of exercises so I followed.  Brace helped me to do the work, but didn’t improve the problem.  For exercise, the pain got worse.  So I stopped in about three weeks.  I still wear brace as needed.

A day later, I received a phone call. “Your liver function is not normal.  Rollback methotrexate to 15 mg.” Sigh….I thought I finally got the right combination…I didn’t have any liver symptoms….but I needed to cut down.  The effect was obvious.  But I was determined not to increase prednisone, because there was a DEFINITE improvement in my sleep quality.  Before tapering down prednisone, it was normal to wake up at least twice for bathroom.  No longer.  Maybe once at most.  Water retention in legs must have decreased tremendously.  I don’t want to go back to the previous style.

To be continued.




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