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A New Diagnosis Means a New Treatment Plan

A little over a week after Sjogren's was confirmed I had an appointment with my rheumatologist. My head was filled with questions and possibly a little too much online reading (however I have graduated from google and now use my college's online database to read medical textbooks). I had a list of questions on my phone I wanted to ask and did get to most of them. However the ones I missed was due to me already feeling overwhelmed and wanting to focus on specific things, not because the doctor rushed me which is a nice change.

The most important part of the appointment was figuring out a treatment plan. My rheumy asked what the most pressing symptom is and obviously it is the autonomic nervous system issues (autonomic neuropathy). He thought the best treatment option was a medication call azathioprine (Imuran), which is an immunosuppressant drug. However before I could start I need a blood test to see if I had the enzyme needed to properly metabolize the medication (10% of the population is deficient which can lead to bone marrow failure).

After 10 years of symptoms I was so ready to start actually treating the thing that has been making me so sick that waiting a couple more weeks seemed like agony. Thankfully the blood test came back positive and I was able to start azathioprine almost a week ago. We also upped my prednisone dose. While that was the last thing I wanted to do and have also really been struggling with POTS thanks to the heat and if the root of the problem was Sjogren's prednisone could help and it really has.
If getting better means spending a few nights on the bathroom floor I can handle that

All the medication has been a struggle to adjust to but I am getting there. I have dealt with some side effects from the azathrioprine which have just reminded me of the really bad days of gastroparesis prefeeding tube. I am hoping they will get better as time goes on but I an increasing my dose Friday so that should be interesting. The increased prednisone dose has helped with POTS symptoms and gastroparesis symptoms when the azathrioprine isn't making me too sick to eat much. However I have been a bit wired and irritable from it but both those things seem to be getting a bit better as I adjust. Now I just have to wait a few weeks and hopefully the autonomic neuropathy will start to improve.

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