When The Meds Create Their Own Side Effects

MCAS is complicated. Let me repeat that to those in the back: MCAS IS COMPLICATED! As in, some days it is the most knotted, tangled ball of necklaces that are interlaced with one another and when you finally get down to the last two necklaces, they just don't want to relent. MCAS is my knotted necklace ball except it's going on inside of me and no one can see where the knots are and how to untangle them.

While one medicine helps to combat the red hot, burning flushing of my face or the severity of my reactions, that same medicine gives me a different side effect. Why, you ask? Because my mast cells are reacting to the "other" ingredients to the medicine. Did you know that all of our medicines are laced with inactive ingredients? Some of them have traces of soy, corn, and even gluten. I learned this years ago when I would take OTC Tylenol and wake up feeling absolutely awful. It took me a very long time to correlate it. When I found a compounding pharmacy that would make me capsules of pure Acetaminophen and/or Ibuprofen (with none of those yucky inactive ingredients), lo and behold, I felt the pain actually go away--as it was supposed to do with the meds--and not be left feeling worse for taking it, as would happen with the OTC meds. Crazy, right? That epiphany brought me so much help and balance when my body would be in a full on tailspin of horrendous, painful side effects. Seven years later, and I still have my OTC meds compounded.

So, that's where I am at right now. It's been 8 days since my follow up to the Immunologist and he told me to double dose everything at night. I am waking up with swollen, painful eyes and feeling so sluggish because it's just too many inactive ingredients for my body. And instead of my typical red, burning flushing on my cheeks I am getting splotchy spots all down my cheeks instead. So is that the new trade off?

Oh, I forgot to mention that compounding all of the meds he prescribed would send us to the poor house. It's SO EXPENSIVE to compound medicines. Those OTC Tylenol and Ibuprofen meds we have compounded for me is a $50-$75 investment once a year that I take sparingly, but they are there when I'm in desperate need. I don't know what to do so last night I didn't double dose and I felt a tad better this morning. But I also ate like a bird at dinnertime so I didn't have a "heavy to digest" dinner as a variable either.

It's all so very complicated. Every day is different. There isn't any consistency to this madness. What worked for me yesterday with what I ate or put on my body (make up, lotions, soaps) may not work for me today.
C-O-M-P-L-I-C-A-T-E-D!