Using Narcotics with MCAS: Seeking Advice

I feel like it’s worth mention that I also have very SEVERE MCAS. I’m talking using 15-20 epi pens per month due to recurrent anaphylaxis. So there’s no way to predict who will be able to tolerate painkillers. I’m incredibly lucky and grateful to do okay with them tho. Many don’t.

I take both Dilaudid and Oxycodone with my MCAS and tolerate them well. Initially, we combined the dose with a small amount of Benadryl which staved off early reactions. Once my body acclimated, we dropped the Benadryl and I’ve been good ever since. Opioids are known mast cell agonists tho so you ARE correct in being hesitant. For some, they are a major trigger. They can even cause bone pain from the reaction alone. But it’s worth a shot if you’re in a lot of pain. Worst case scenario, it flares you for a few hours but then once it wears off you should recover quickly.