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Monday, 7 May 2018

"Obviously Not That Serious"

When it comes to medications, I am often caught between a rock and a hard place.

The biggest complication is that I have several allergies to medications. Those allergies, to make things even more complicated, are not considered common allergies. For instance, the percentage of patients who have experienced severe Pancreatitis caused from specific medications is less than 5%. That can also be said for the major stomach bleed I experienced from another medication, and the swelling from biologics.

Here is where it gets even more confusing.
In my chart it shows that I am allergic to several biologics. I have endured severe swelling, directly caused by the injections of:
Remicade
Enbrel
Humira
Simponi

BUT - is this a full-scale allergy, or are TNF blockers simply exacerbating my HAE?? Is the mechanism of these biologic medications simply activating my Hereditary Angioedema to the point where I experience these severe swells.
So it might not be an "allergy", but rather an "intolerance".
It's all confusing.
But the symptoms themselves are the same - I still experience edema in my throat, chest, extremities, which can impede my breathing. So no matter what the proper term is, the reaction is the same.

The treatment, however, is hard to decipher. If it is HAE related, then the blood-product, through an IV vs a sub-cutaneous injection, would do the trick - which it did 2 months ago. If it is only an allergy, then a high dose of Prednisone would help.

Now here is where things get impossible.

My HAE reacts to my emotions. It is very sensitive to my emotional responses.
So - even if the swelling in my throat and chest is caused from an allergy, KNOWING that my throat and chest are tightening/swelling is very stressful... so even if it IS an allergy that starts it off, having my ability to breathe hindered is going to freak me out and thus trigger an HAE episode which will further swell my throat and chest.

So how the hell will we ever know for sure?!?

All I know is that last month, I tried to just relax at home and ignore the slight tickle and tightness and focus on my sub-cutaneous C1-INH injections twice a week to keep the swelling down, instead of rushing to the Emergency Department and freak myself out even more.
But because I did that - because I STAYED HOME - I also heard this sentence from my doctor: "well, if you stayed home then it obviously wasn't that serious."

In a way, my doctor is right. My throat and chest did not close much or very quickly, because I only had a tickle and feeling of tightness, with no significant decrease in my ability to breathe.
But I still had swelling in my throat and chest. I still had symptoms including the tightness, tickle, a voice change, and anxiety from knowing that it could turn badly at any moment.

A throat swell is a throat swell.

I don't know if this made any sense... everything is always so confusing... no wonder my head hurts.

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