A Day In The Life: The Waiting Is The Hardest Part

I’ve been completely off of most of my mast cell disease medicines for a couple of weeks now. It’s not something I recommend anyone else do before speaking with their doctor first, but I knew I had to do it.

Why in the world would I stop taking my MCAS meds?

Well, I was desperate to stop the tsunami of inflammation that was causing my skin rash, my brain fog/fainting/seizures and my debilitating pain from head-to-toe and none of the pills I was on had anything in them to fight inflammation.

They did help with the allergy symptoms and the GERD but at the same time the fillers in them were obviously triggering a systemic inflammatory reaction. It was getting worse the longer I took them and to complicate matters, I kept increasing my doses hoping that the pills would fix things.

They didn’t (of course!).

In fact, quite the opposite happened. Looking back I can see that they actually made things much, much worse instead and I wasted the last year and a half taking them when I should have went back to the compounding pharmacy and tried that route – again.

But even that’s complicated.

Early in my diagnosis I did try compounded versions of my H1 & H2 medicines for a month to see if that would make a difference but I was surprised that it didn’t. Now I know why! It took me the better part of a year after that to figure out all of my triggers and there wasn’t a time when I wasn’t taking or eating something with at least one of my triggers in them, even when I was on the compounded antihistamines. Especially back then! I was steeped in triggers still and didn’t know it.

So now I’m practicing strict trigger avoidance since I’m off of the H1s and H2s and I’m just taking oral cromolyn sodium regularly and using Nasalcrom as needed. These are the only two medicines I can trust that don’t trigger me and, thankfully, they also help me immensely. I definitely can’t not use them ever again.

Interestingly, I did find that I was able to lower my doses of them by about half to get the same relief once I stopped taking the trigger-filled pills. I also found that most of my inflammatory symptoms went away completely (no more granuloma rash – yay!) or were drastically reduced.

I’m still having some pain, mostly in my hip again which flares if I am up and about too much, but it’s that time of the month so my inflammatory cytokines are hard at work doing their normal thing that happens to normal women. My excruciatingly painful periods are still under control (thank the heavens!) and I’m just getting mostly allergic symptoms, like sneezing and burning skin and itching, which I can live with. I’m waiting to see if a lot of that goes away when my period is over, which I’m sure it will since ovulation and menstruation triggers me.

So now I’m in a wait-to-see mode with everything, really. I see my doctor again in November and I don’t know that I’ll need H1 and H2s on a regular basis again. I don’t know what I’ll need daily going forward now, besides the cromolyn sodium oral and nasal spray, to be honest.

I have never been as trigger free as I am now (except for my own estrogen of course) so I’m just enjoying the reprieve from the pill-induced inflammation while waiting and watching to see what happens.

And hoping for the best!


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