Right now, I take a variety of medications to treat my POTS, gastroparesis, and MCAS. This includes anti-histamines, mast cell stabilizers, GI motility drugs, steroids, and fluid retention drugs, as well as a couple of supplements. Because I have MCAS and could potentially react to certain additives found in prescription medications, many of my medications are compounded through a local pharmacy that uses special encapsulations with less ingredients, which are derived from vegetables.
I wanted to post my medication list because I think that it could be useful information for someone struggling to get their symptoms under control. In the past, my mom and I would research online for new medications to bring up to my doctors. Both of my GI doctors also came up with new ideas on what medications might help me. However, I must preface this post by saying that I am in no way qualified to give direct recommendations as to what medications a person should take, and a doctor should always be consulted when it comes to medications. Mestinon 30 mg 3x day: For GI motility and POTS Florinef 0.1 mg 1x day: For POTS fluid retention Cromolyn 200 mg 4x day with meals (compounded): MCAS stabilizer Zantac 150 mg 2x day: MCAS anti-histamine Xyzal 5 mg 3x day: MCAS anti-histamine Ketotifen 6 mg 3x day (compounded): MCAS anti-histamine Quercetin 1000 mg 2x day: MCAS stabilizer L-Carnitine 1000 mg 2x day: mitochondrial supplement CoQ-10 100 mg 2x day: mitochondrial supplement Singular 10 mg 1x day: MCAS anti-histamine Doxepin 150 mg 1x day (compounded): MCAS anti-histamine Benadryl 50 mg as needed every 4 hours (dye free liquid): MCAS anti-histamine Methylprednisolone 10 mg 4x day (compounded and weaning off): steroid Creon 24,000 up to 6x day with fatty foods: pancreatic enzyme Out of all of the medications I take, the Benadryl has the most impact on how I’m feeling. For most people with MCAS, it is a rescue medication, but for me, I rely on it daily to help me function. For some reason, I haven’t been able to figure out why it only sometimes makes me sleepy. The Methylprednisolone gives me the most negative side effects, and even though I am weaning off of it, I still get hot flashes and night sweats, acne, “chipmunk cheeks”, and insomnia. For awhile, the Doxepin would put me to sleep at night, but since I started taking the Methylprednisolone, my sleep has gotten worse again. There are quite a few other antihistamines in my medication regimen, but I don’t feel any greatly significant effect with those. However, I’m not going to go off of them because I don’t want to change anything now that I’m on an upswing.
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