Challenges In A MCAS Flare
Flares are a common headache for those of us with chronic illnesses. I’ve had flares with Ehlers Danlos Syndrome in which I had lots of subluxations and dislocations. Usually, this involves fingers and toes. But, sometimes the SI Joint is out of the socket just enough to make life miserable. My latest flare involves Mast Cell disorder.
Doctor’s have never given an official diagnosis between MCAS or MCAD. I’ve tested negative for Mastocytosis. But, the immunologist said that I definitely have a Mast Cell disorder. When I first began having episodes of Anaphylaxis, it was terrifying. Over the next 5-10 years, the episodes came farther apart as I learned to avoid triggers. Using antihistamines daily and more at the first sign of a reaction helped me to avoid using my Epi-pen.
The best waste of money was when I was able to throw out an expired Epi-pen. That meant that I didn’t have to use one. Episodes that did come, would often come in clusters. As my list of acceptable foods has grown shorter every year, a few less Epi-pens have been used.
When I began the protocol for MCAS, I hoped that it would prevent all of my episodes. This hasn’t been true at all. I don’t believe that the protocol has made any difference in the number of reactions. Of course, it could be that I would be having more or more extreme reactions if I wasn’t on the drug protocol.
The last week has been an allergic reaction nightmare! Every evening I can feel a reaction starting, and even if I put it off to make sure, I’ve ended up taking Benadryl. A few days ago, the reaction progressed to Anaphylaxis, and hubby gave me a shot with my Epi-pen. Ever since that day I’ve been dealing with a flare of Mast Cell.
Even though most of the days’ reactions have been resolved without an Epi-pen, I am becoming worn down by the daily flare. When I have to use an Epi-pen the side-effects take their toll. I feel exhausted and moody. Even when I take only one Benadryl a day, I suffer with moodiness and depression.
Answer me when I call, O God of my righteousness! You have given me relief when I was in distress. Be gracious to me and hear my prayer! Psalm 4:1
Over the years, doctors have told me to substitute another antihistamine in place of Benadryl. When I’ve tried that I had bad results. Benadryl seems to be the only fast-working pill to work for me. I don’t know why this occurs, but it could be because of all the other medications I’m taking. My body has always responded strangely to some medications. This is a typical problem with Ehlers Danlos patients and MCAS patients, too.
As usual, the cure often brings a new problem. I think of this as a cycle of misery. When I’ve mentioned it to doctors their response is usually a shrug or no response at all. This is one of the core issues that I face, living with multiple chronic illnesses.
While there is no answer to this dilemma, the best thing to do is to be as cautious as I can. Prevention from eating or inhaling any toxic substance (toxic to my over-active immune system), is the the number one task. Each day that I live without a flare is my good day.
Disclaimer: I’m not a medical expert. This post contains my opinion, and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.
@2020, copyright Lisa Ehrman