Reasons to Decline Prednisone: Balance

Many of you may have heard of the infamous Ketchup Fight 2k16, in which I decided that I was no longer able to abide by the GVHD diet 100%. The diet involved canned fruit, plain meat (think turkey lunch meat), white bread, and plain spaghetti. You probably think you’ve had plain spaghetti before, but I’m talking P L A I N. As in no butter, no olive oil. Sticky clumpy “spaghetti” globs (if someone ever fed you that, go back and ask them why they hate you). After a while, I was allowed to add low seasoning chicken tenders (bless, right?) but without ketchup. Meanwhile, I was stuck in a never ending world of not being able to consume enough calories to sustain myself. I’d feel like I was chewing sod all day only to come up with a calorie count of 800. Not fun.

So, after awhile, I began to bargain. Ketchup with the chicken tenders, chicken noodle soup with vegetable broth, peanut butter on my white bread. Some people were horrified that I would risk my health for taste, but at this point food had become more than food for me. I felt inhuman, deprived of such a basic part of living. So I ate ketchup. I’m incredibly fortunate to have a wonderful oncologist who understands that quality of life is important.

So that brings me to today. I am having GVHD problems in my mouth and potentially eyes and liver (test results pending). I also have been newly diagnosed with psoriasis (how embarrassing is it that my first thought was ‘Kim K has that!’) My quality of life is still higher than it was on prednisone. The doctor I saw in clinic today (who is not my primary oncologist) wants to put me back on prednisone, but I am insisting that we try something else first. Ruxolitinib? Imatinib? There are options. I just can’t.

I never thought I would be someone arguing with doctors about my treatment plan, but I already have lifelong side effects from the year of prednisone (mostly osteopenia and potentially AVN) and I have to live in this body for the rest of my life. I’m also not a fan of the huge face. That balance is important to me. I take my meds every day, go to clinic appointments twice a month, see specialists and do mouth rinses and sleep nine hours and work hard in physical therapy. I’m also going to eat ketchup and do a summer internship in New York and keep my normal face, thanks. Even if that makes me crazy.

PS everyone should put cream cheese in their omelettes!!! Who knew

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3 thoughts on “Reasons to Decline Prednisone: Balance

  1. You’re absolutely right, there are definite alternatives to prednisone. Stanford BMT been investigating ibrutinib as a cGVHD treatmentment with clinically meaningful responses, and imatinib is also worth a try.

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