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

The Treatments / Friday, September 15th, 2017 / no comments

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 following the principals Dr. Afrin laid out in his book. 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. I will add other medicines back, one at a time, to assess their efficacy, starting with Ketotifen, an anti inflammatory mast cell stabilizer and H1/H2 antihistamine.

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 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!

Update 12/2017! I am taking Ketotifen now and feel amazing! Read about it here.

Mother. Wife. Patient. Keeper of Huskies. MCAS blogger & advocate. Living life in the mast lane with the Grand Tetons & Yellowstone as my backyard. You can also find me blogging at Life In The Mast Lane and The Empty Nest Housewife.

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