mama whose curiosity knows no bounds

Archive for December, 2014

Christmas flare

This Christmas break turns out to be mentally not so stressing, but physically very tough one.  Here’s the rant.

The week began awesome – I went to Cleveland to see my new rheumatologist, one of the best in the country. And he was pretty busy but aggressive in treatment. He made me stop taking methotrexate and switch to Cellcept. It hasn’t kicked in yet, but I am very hopeful about this switch. Another awesome thing that happened was he took my complaints of focus issue (I can’t sustain attention as I need to) seriously. To rule out CNS lupus, he ordered MRI. All other doctor dismissed this as “it’s just a menopause”. And he showed a proper respect to those in biomedical research fields. As a result, he treated me like a pro, not a whiner.  After all, I do research on type I diabetes, an autoimmune disease. And I have extensive background in DNA metabolism. Better yet, the MRI was done the same day. I fully expect that I had to go back there – 3.5 hour drive minimum, usually much longer in winter. But surprise! I would get it done all in one day! 

The problem is he virtually has no opening.  I was able to see him using an alternate route – I used a personal medical advocate that my employer provides as a part of benefit package. Without that advocate, I would never be able to see that famous doctor. And even the last appointment was with the resident fellow physician. So the doctor found opening in his time attending the same resident fellow, so he can see me again. So this is not an ideal start but I at least got to see the best rheumatologist in the country and he is treating me aggressively. He even suggested starting Benlysta, a biologic IV infusion medicine. Problem is, it is super expensive – $30k per year. I haven’t checked my prescription benefit, but the regular copay rule doesn’t apply to the biologics, that’s all I know. I have to investigate once the new year starts.

I was so excited that I didn’t feel hungry at all or tired at all. Bad sign. Because I will get the doubled to even tripled version of fatigue afterward. The next day, I had a bad nasal congestion and some cough. That sounded like a cold.  Another bad sign. Because infection is the most common trigger of my flare-up, followed by overexertion.

Still on Wednesday, Christmas Eve, my family had a cleaning day. My house was so cluttered and dirty beyond belief. I worked 4 hours nonstop, yet we could finish only two rooms.  I don’t want to count how many rooms I need to work…

Then Christmas Day came. Well, S was happy with the present – creme brûlée set with blow torch and ramekins. And potato chips. And she started baking Japanese style Christmas cake. On the other hand, I was miserable. I was fatigued as hell and every joint of my body hurt. It was clearly the flare up.  But because I started Cellcept, I was determined not to take prednisone this time.

The flare continued the following day. Except for a brief meeting to plan a fundraiser, I stayed in bed all day. I could hardly walk.

Now, Saturday morning, I feel a bit better, but not completely out of the wood yet. But today, I will see my son. No matter what. I just can’t live without seeing him.

Cellcept is supposed to be stronger than methotrexate, but it won’t reach full dose for another 10 days. Fortunately so far, I don’t have any serious side effect yet. I should thank that this med transition overlapped the winter break, I guess. You know, it’s better to look for a positive and that is mine for this flare.

B.

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