I’m getting an allergy panel in a month or so. This means I have to be off my antihistamine for 5 days before.
THAT means I have to start tapering off ~2 weeks ahead of time; 3 weeks would be safer, but I don’t see how to endure over 3.5 weeks total with that level of obnoxious symptomatology and brittle physical fragility.
That said, I *really* want the data.
You might ask, “Why?” (Or possibly, depending on how familiar you are with the twisted satire that is my health record, “WhyTF?? Are you *crazy*??” As if you didn’t already have a definite opinion about *that*! 😏)
Well, here goes…
Flash back to 2013
Years ago, under the tutelage of a late & very lamented friend who Knew Mast Cell Stuff like I know the back of my hands, I finally (in 2013) did my empirical testing around whether mast cell & histamine activation-like signs & symptoms I was struggling with, would respond to treatment.
Step 1: reducing & eliminating competing problems
I had already gotten excellent neurological & biofeedback training, which worked well for many things (Go, Pain Psychologist Dr Faye Weinstein! I got tremendous and lasting benefits from my work with her. Highly recommended. “Stabilize, stabilize, stabilize.”) While I had excellent results from the neuro stabilization, it didn’t make much difference to the allergies, a particular “flavor” of brain fog, food & digestion issues, or the usual allergy circus of itching facial orifices & random urticaria.
The histological issues persisted most obnoxiously. This was 9 years ago when the mast cell activation diagnoses were not as well developed, and at a time that, though I had access to an enormous pool of well trained doctors, I was already up to my hip-waders in the maximum number of appointments I was able to keep.
What do you think? Pursuing testing and inquiry into a set of issues that were still widely considered to be a matter of hysteria? — For a middle-aged woman with pain diseases and 60 extra pounds of weight, do you think *that* would have been a good use of my limited time?
So, I went empirical on it.
Two methods of science: “empirical” and “scientific” method
Both methods are scientific, in that they require diligent examination & limiting of variables as well as testing, retesting, and recording results accurately.
(But hey, that nomenclature isn’t confusing, right? <eyeroll>)
It boils down to this:
Empirical method: what works in this case in particular?
Scientific method: what’s generally likely to work in many cases?
The empirical method of science is brilliant on a case-by-case basis, there’s nothing better; but avoid making assumptions beyond that case. The scientific method of science depends on hundreds, ultimately thousands, of cases, and from all those together, it generates statistical probabilities about what’s *likely* to work under certain circumstances as a general rule. It’s much more widely applied, but explicitly *not* individualized.
This is why, as someone dealing with multiple rare issues, I test everything ~3 times on myself before deciding if it’s a good idea for my particular situation.
Now the next section will make more sense.
Right med, right dose, right time
I tried several antihistamines to see which one helped me the most.
Then I experimented with dosing to see how much it took to get me functional most of the time.
Then I experimented further with once-daily dosing, or dividing the dose in two and taking it twice daily. It had better results (and no “oog” feeling) if I took it twice a day.
In the end, I wound up on one of the top 3 meds for mast cell/histamine issues. I also wound up at the common dose for those with a solid case of Mast Cell Activation Disorder. (The twice-daily dosing was my own special twist, but I’ve since learned it’s not that uncommon among “masties”, as people with mast cell dysfunctions refer to themselves.)
Without any further ado, my doctors added MCAD to my list of diagnoses.
(As with every med and supplement, I continued testing it every 6 months or so, backing off the dose and looking for the minimum effective dose, but stopped doing this because of … we’ll get to that.)
But, frankly, a differential diagnosis doesn’t yield enough info to change anything causative. If I can nail specific allergens — or culprits — and receive treatments that can actually reverse this ghastly crap, that would be *great*!
So, I really want the data.
Histamines & tendon problems
I stopped trying to cut down on the antihistamines a couple of years ago, because I couldn’t bear any more injuries that threatened my mobility.
“Mobility? Huh??” I hear you ask.
One of the things the antihistamine helped with was tissue-tearing. I didn’t expect that, but was delighted not to be twisting my ankles on uneven ground or sudden jumps away from traffic, then having to crawl or scoot home because hopping on 1 foot when your tendons don’t work is a terrible idea.
As I thought about it, it made sense though…
Q: What happens when your histamines are active?
A: Among other things, inflammation in and around your cells.
Q: What happens when cells get inflamed?
A: Among other things, cell walls get weak and leaky.
Q: What happens when connective tissue cells get weak?
A: They tear more easily.
So, yeah, maybe MCAD could weaken my connective tissue after all — especially because, for one thing, I started out hyperflexible, which is a setup for these kinds of problems; and for another thing, the fibrosity of fibromyalgia has made my connective tissue more brittle & easier to tear.
Ducky! Another hat-trick! 🤣🤠
Back to the testing
This is the test where they put a grid on your back and scratch or inject tiny amounts of different stuff into your skin. In about 20 minutes, whatever you’re going to react to should be a nice hot ruddy lump, technically a “wheal”.
For this to happen, your body has to have nothing interfering with histamine reactions — in other words, no anti-histamines.
Since the antihistamine I wound up on has a long half-life, I have to be off it for 5 full days before testing.
Prepping for the test
Because going from full dose to no dose means I can barely get out of bed safely (see “Histamines & tendon problems” above), I have to taper down. I’ve done this before, usually to eke out my meds when my supply is running late. It’s familiar territory.
Experience tells me that:
- I have to taper at a rate of no more than 12.5% of my daily dose at a time.
- I’m best off (in this terrible sitiation) stopping for 3 days at each new dose before the next step down.
This means that it would take 20 days to taper off to 0 (shorting the last step to 2 days instead of 3) *and then* 5 more days at 0.
Doing this with tissues crying, “Go on — tear me!” And every bite of food, breath of air, bit of furniture, bump in the sidewalk, or tussock of grass all giggling in evil tones (so to speak), eager to hear my muffled yells.
Yeah. Tasteless spoofing aside, that’s not a great situation to spend 3.5 weeks in.
Then, of course, as soon as I can horse down my meds again, it’ll be several days before I qualify as human.
Then, about another 1 to 3 weeks before I get back up to baseline function.
My Halloween costume will require very little makeup for me to pass as a zombie, so that’s one bonus.
What a month-and-a-half to look forward to!
Is all this really necessary?
Well… I really, *really* want the data. If this is at all reversible, wouldn’t that be worth a few weeks of howl-worthy endurance?
Obviously, yes… but I don’t think I could keep at it for over a month. I’m good at enduring, but I’ve got hard limits.
I really, *really* want the data.
Managing towards the best possible outcome
My doc prescribed me some prednisone to take in order to avoid winding up in the hospital over this. I look at the results of my last round of prednisone — the change in my face and the truly shocking stretch marks (which made my dermatologists blanch and leap back, no kidding) — and I consider this truly last-ditch stuff. Beats nothing, I guess. It might keep me out of our ER.
There are dietary issues to consider. (What follows is a brain-dump from my years of querying doctors and reading, as well as my empirical food testing.)
Food matters: boost the signal
I know that the system being tested (mine) can respond more truthfully if it’s familiar with the molecule being tested. For instance, I haven’t eaten gluten in years, so this test might possibly come up negative to that.
Doesn’t mean that, the next time I walk past a bakery without my mask on, I won’t get an itchy swollen throat and everything won’t turn white for a bit, it just means my body had enough of a break to stand down, and will need to re-arm.
With that in mind, I might grab a couple of saltines before I go in. If I could calm the gluten circus enough to just be safer walking around, that would be awesome.
Food matters: reduce the noise
I’m getting off the aged and fermented food, because that makes such a dramatic difference in my pain and swelling. This includes seafood and beef and anything packaged (look up what creates histamine in food).
Despite that, I’m making exceptions for things which I want to make sure my body has experienced in the month before testing — nuts, bananas, stone fruit, fish, grains in addition to glutinous ones, even beans — although that’ll be a period of gastroparesis hell, but this system must not be “bean-naïve” for the test.
Because I really, *really*, REALLY want the data. This is the kind of info that could change the course of my life for the better.
For that, I can get through some serious struggle.
Ramping down steeper
I’m going to go down 12.5% of my dose every 2 days, instead of 3. This will shorten the ramp-time to 2 weeks. Recovery might be a little longer, but I can maintain attention on what I’m doing this for, for that length of time.
Until then, I’ve got a lot of cooking to do and a freezer to stuff with things that
- Won’t hurt me more than absolutely necessary, and
- Will include exactly what I think I need to be exposed to, to maximize the value of the test.
If you’re in a similar situation, remember that your mileage may vary. Ask your own docs, and then ask their nurses the same questions.
The differences in the answers tend to reflect the wholism that nurses work with, a nitty-gritty pragmatism that rounds out the more optimistic notional-ness that doctors can succumb to. Both views matter.
For only the second time in my life, I might do actual menu planning. I’m usually more of a “what’s fresh? What’s cheap? What’s safe? What’s appealing? Throw it in the pan” kind of cook, but that takes brain. I’d like to insulate myself from a potentially very brain-free near future and reduce my frustration over the coming month. Having easy-to-grab, safely frozen meals sounds fabulous.
Here’s my plan…
The grocery order just arrived, so if you’ll excuse me…