#(the manga was 'I'm a terminal cancer patient but I'm fine' btw)

[kirby-the-gorb]

I just bought myself a manga about the artist going through severe illness and I found it comforting to read someone else's experience, so I thought maybe I would share a little about my experience with MCAS again. so here's all the pills I take!

cromolyn. 2 ampules mixed with water 4x/day (although I'm often out of bed for 12 hours or less and have trouble keeping track of time, so often it's 3x instead). mast cell stabilizer.

multivitamin. I only took this for a week so far and stopped to gather data. (my paranoia was getting bad, which often means I'm reacting to a med. this is a cheap one with many fillers.) meant to make up for difficulty accessing food and possible malabsorption.

fludrocortisone. 2 pills a day. for POTS.

atenolol. 1 per day. also for POTS.

montelukast. 1 per day. technically for asthma, but works by blocking one of the signals the mast cells send.

loratadine (aka claritin). 1 pill 2x/day, which we had to fight the insurance about after a while. antihistamine, meant to prevent anaphylaxis by blocking a different mast cell signal.

aspirin. 2 pills 2x/day. to reduce inflammation and control chronic pain.

whichever oral hormonal birth control my insurance will give me (it varies). 1 per day. menstruation makes my MCAS flare and I still have incomplete cessation even after an ablation, so I keep taking it even when not putting myself at risk of pregnancy.

dye-free diphenhydramine (aka benadryl). another antihistamine, taken when my MCAS flares to reduce or completely end the symptoms. (the pink dye in the regular formulation is actually a very common trigger.)

low-dose prednisone. steroid kept on hand for unavoidably high-demand occasions (like moving across the country) or unshakable prolonged flares (like, a week).

that's 8 pills in the morning, 3-4 at night, 8 ampules in the day, and 2 different emergency meds. plus I try to drink a gatorlyte every day (also good for POTS and certain mineral shortages) and try to avoid triggers (including heat, stress, and overexertion -n- )

3 and 4 were the first meds that ever made me feel any better, before we'd figured out it was MCAS. (likely with secondary POTS/EDS.) 6 and 7 are the first line treatment for MCAS, they're the first medications I actually took *for* it. they are often used in combination with famotidine (aka pepcid) but that made my paranoia super bad so I stopped taking that one.

this was my regimen established before I got covid last july, which made my MCAS much worse, which also made it impossible to get a new doc post-move since I can't physically get to an appt. so this is likely to change once I have medical care again. being sick is a lot of work!