If you have mast cell disease, your basic arsenal for
managing your disease should include elimination of/ avoidance of known
triggers, low histamine diet, second generation H1 antihistamines and H2
antihistamines. Leukotriene inhibitors,
aspirin, mast cell stabilizers, steroids and anti-IgE are also possibilities
for maintaining a baseline.
As a mast cell patient, a decent baseline is what you are
going for. A reasonable baseline does
not always mean that you can live the same way you did before your diagnosis. It means that you are somewhat functional on
a day to day basis. What this looks for
is different for everyone, but I aim for not being in bed for 20 hours a day,
not being in 5/10 pain every day, being mentally coherent. Most importantly, you should not have to take
rescue meds frequently. If you need
rescue meds often, then you are not covering your mast cells well enough with
your regular meds. If you have
eliminated triggers, then this usually involves tweaking your meds.
I’m going to give you my insights on what that looks like,
but please keep in mind that any med changes should be discussed with your
treating physician. We are all different
people and med dosing can be affected by many factors.
Part of why mast cell patients are prescribed second
generation H1 antihistamines is because they are usually not sedating, have
little anticholinergic activity and are, to be honest, pretty safe. Mast cell patients often take several times
the recommended daily dose on medications like loratadine and cetirizine. (Please note: the daily recommended dose for
Benadryl, which is a first generation H1, should be respected – overdosing can
have serious consequences.) So while the
average person may take one Zyrtec a day for allergies, a mast cell patient may
take 3 or 4 a day. The same is true for
the H2 antihistamines, like ranitidine and famotidine. It’s not unusual to dose very high on
those.
If you have uncontrolled symptoms on second generation H1
and H2, changing the meds to something else in the same class may help. Sometimes Pepcid works better than Zantac, or
whatever. Some people find that using
one Allegra and one Zyrtec works better than two Allegras. Consider also that inactive ingredients can be
triggering and thus decreasing the effectiveness of a med.
If you have screwed around with H1 and H2 meds and have
increased doses, adding leukotriene inhibitors, cromolyn or atypical H1 meds,
like promethazine or doxepin, may help.
If that fails, ketotifen helps a lot of people, and anti-IgE (Xolair)
has benefited some mast cell patients.
Beyond this, you are looking at things like regular IV fluids, steroids,
and less palatable choices.
As I mentioned before, having a good baseline means not
using rescue meds regularly. This is
really important to feeling as well as possible. Serious reactions take a while to recover
from, even if they don’t need epi. So if
you’re having one every day, it is impossible to get to your baseline without
serious intervention. The meds used to
control serious reactions, including Benadryl, can cause rebound reactions that
look like anaphylaxis, but are not anaphylaxis.
Let’s talk about this.
Benadryl can cause rebound reactions for two primary
reasons. The first is because it is a
very strong antihistamine and it stops histamine release symptoms really
well. One of the things Benadryl does is
it stops mast cells from releasing histamine.
So when it wears off, mast cells tend to release a lot of that histamine
at once. Another release is that
Benadryl has very strong anticholinergic action. When your dose wears off, you can have what’s
called “cholinergic rebound.” This can
cause headache, nausea, vomiting, diarrhea, brain fog and other symptoms. Sound familiar? This is why people feel “hung over” when
their Benadryl wears off. Second
generation H1 antihistamines, like cetirizine and fexofenadine, have almost no
appreciable anticholinergic activity so they tend to not have this side effect.
Mast cell patients get hit with the double whammy of
sizeable histamine release at the same time as they get hit with cholinergic rebound. So rebound reactions can feel like
anaphylaxis, but they’re not the same thing.
If you take Benadryl every day, you are going to have a rebound reaction
every day. It may not be severe, but
this is not uncommonly the culprit in patients who say they always get sick
around the same time every day.
Another reason why it is generally not recommended for mast
cell patients to take Benadryl every day is because it can stop working. This is called tachyphylaxis and it basically
means your body gets used to it. When
you need to use epinephrine, you are counting on Benadryl and steroids to help
control the effects of anaphylaxis on your body. Patients in whom Benadryl is ineffective get
into very dangerous situations when they anaphylax. I have a few friends like this and it is
seriously not pretty.
It is possible for anaphylaxis to be biphasic or
protracted. Biphasic reactions are not
common, but seem to be more common in mast cell patients than the general
population. (This is my personal
observation.) In these reactions, once
the reaction is stopped with epi, you can have another anaphylactic episode of
the same or worse intensity without a trigger.
This generally happens within 24 hours and is the original reason
Epipens were sold in pairs. In
protracted (sometimes called multiphasic) reactions, this can continue to
happen for a number of days. I find in
my personal experience that use of epi early is the best way to avoid
multiphasic reactions.
If you absolutely must take a medication that causes a
serious reaction (by which I mean not a typical side effect), desensitization
is usually recommended for mast cell patients as opposed to taking
antihistamines with each dose. This
method really just suppresses the immediate symptoms, not the inflammatory response. Drug reactions for mast cell patients can be
serious and any reaction can escalate even when it has been mild in the
past. For patients who react to
salicylates, but need to take aspirin, Dr. Castells has written an aspirin
desensitization protocol that is frequently used.
Part of why people get into these cycles with rescue meds is
that they often don’t understand why they are having reactions. Mast cell patients need to keep careful
inventory of their daily histamine level because things that may not cause
reactions individually can cause a reaction when you have them all
together. For example, if you have a
relaxing day with no stress, maybe you can eat a spinach salad. But if you go for a walk outside in the heat,
and you eat that same spinach salad, you may have a reaction. This doesn’t just happen to mast cell
patients – there are plenty of recorded instances of patients having allergic
reactions to food ONLY IF THEY EXERCISED THAT SAME DAY. This is because exercise increases
histamine. Heat increases histamine. Eating increases histamine. Stress increases
histamine. Sex increases histamine. So all of this histamine adds up. So you may be able to drink a beer, or you
may be able to walk two miles, but if you try to do both the same day, you may
have a reaction.
Of course, there is also an idiopathic aspect to mast cell
reactions, which means that some people have symptoms for truly unexplained
reasons. However, I find these happen a
whole lot less when you really track activities/histamine and try to eliminate
triggers.
Part of how I evaluate my “histamine baseline” for any
particular day is by certain physical parameters that I refer to as my “mast
cell dead giveaways.” If these are
present, I know I am already starting out as reactive and need to lay low and
avoid histamine that day. Allergic
shiners, which look like black eyes, or dark circles under the eyes, are one
for me. Swelling in my fingers tells me
I’m having some edema from mast cell degranulation. The taste of metal in my mouth often precedes
reactions. Skin being more reactive than
usual is a very clear indicator for me.
On a reactive day, squeezing my arm with my hand will make my entire arm
turn red. I take my blood pressure in
the morning and if my whole arm is red or has hives when I take off the cuff,
it is a clear sign to me to not take risks that day. Any type of “cold symptoms” (cough,
stuffiness, clearing of the throat, sore throat) and I have to assume infection,
which contributes to mast cell activation and thus to your histamine
quota.
I have written before about how to manage mast cell
reactions with medication, so please refer to that post for more details.
Keep track of your histamine inventory. Learn the “dead giveaways” for your body so
you can self check. If you’re taking
Benadryl every day for symptoms, it can often be resolved with increasing meds/
adding other meds. Taking Benadryl every
day should be avoided, especially because it causes rebound reactions that can
mimic anaphylaxis symptoms.
I have just started my journey in the diagnoses of a mast cell disorder, and I can not tell you how helpful your blog and knowledge has been to me. This is one hell of a journey, thank you for writing this as it explains a lot with what I have been going through.
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