The day of my first appointment with my THIRD rheumatologist.
The nurse was impressive. She asked all the questions so I can explain almost everything. Then not so long after, the doctor came in.
She looked very young for a board certified rheumatologist. And she looked polished which felt a bit awkward for this rural area.
After reviewing my chart and asked some questions, she did something I didn’t expect from a rheumatologist – she did a physical exam! None of the previous specialists listened to my breath or heart. But she did.
Surprise didn’t end here. She touched (really, physically) ALL joints in my limbs and touched all fibromyalgia tender points. Every time she touched the joint, she said, “this is swollen”, or “this is not”. For fibromyalgia points, she asked every time how I felt. And they DID hurt!
She was more straight forward than the rheumatologist #2. She told me that since my anti-dsDNA antibody was abnormally high while other auto-antibodies were slightly over the reference range, we should call it lupus. She also told me that anti-dsDNA antibody was the best indicator for the status of the disease. So now I had an objective scale to monitor my disease. That was also a relief, because I always had to rely on my subjective pain scale.
She also suggested resuming Savella, which didn’t work and caused upset stomach in the past with rheumatologist #1. But she prescribed Omeprazole along with it so I could try it again.
So now I took: Plaquenil, Savella, Omeprazole, tramadol, for my lupus. They all helped, but they never eliminated the symptoms.
At the end of appointment, she told me to call anytime I had a problem. Again, isn’t that rare? Maybe it shouldn’t. But this was the first time I heard this words from a specialist. I finally felt being cared. I wondered if the difference came from how she was trained…she was an osteopathic physician. Both rheumatologist #1 and #2 were M.D. This might explain that rheumatologist #3 diagnosee illness by touching and feeling, not just by looking at the test result.
When I had a big flare (rash on cheek, incredible and unexplainable fatigue, and flu-like body pain with emphasis on wrists and knees), I called her and she called in a short course of Prednisone. Although I had to be bedbound for at least two days, prednisone somewhat helped.
At the next visit, it was obvious that my kidneys (the organ most often attacked by lupus) were healthy. That was a relief. But anti-dsDNA was still way high. She increased the dose of Plaquenil to 600 mg, the maximum dose allowed.
But taking Plaquenil leads to more doctor’s appointment.
To be continued.