Living with mast cell activation syndrome (MCAS) can be an isolating experience, not only because it’s debilitating, but it is extremely difficult to understand. MCAS is complicated and unique to each individual. My goal is to raise awareness about MCAS, chronic illness, and disability through humor.
I was diagnosed with MCAS in December 2015 after five abnormal mast cell test results after a lifetime of symptoms. Before remission in 2021, I relied on several medications to reduce and block the ridiculous amounts of chemical mediators released by my mast cells. I spent most of my time in solitary confinement (even pre-pandemic!) to minimize my exposure to triggers.
MCAS Remission
In 2021, my mast cell activation syndrome (MCAS) symptoms went into remission thanks to a combination of first lines of treatment and doxycycline. I wouldn’t be in remission if I hadn’t diligently gone through five years of treatment trial and error. In 2024, I began to decrease to successfully my medication without any MCAS symptoms. Currently, I am no longer taking medication for MCAS. While there is no known cure for MCAS, it is possible to feel better and return to doing what you love.
I no longer experience the following health conditions in MCAS remission:
- Dysautonomia: There are many types of dysautonomia, dysfunction of the nervous system, including Postural Orthostatic Tachycardia Syndrome (POTS). Read more about dysautonomia and autonomic testing.
- Subluxations from Ehlers-Danlos syndrome (EDS): With increased joint stability in remission, I became a competitive figure skater.
- Interstitial cystitis (IC): Inflammation of the urinary tract is a very common symptom of MCAS. I began experiencing symptoms at age 3. Salicylates were my biggest urinary tract trigger. My right ureter used to swell and spasm often causing obstructions and pain in my right kidney.
- Premenstrual dysphoric disorder (PMDD): I used to take continuous hormone pills to suppress fluctuations and avoid reactions.
- Food sensitivities: salicylates, histamine, FODMAPs (including soy), and gluten.
Although I have written about many of the treatments I have tried, I do not share the specific medication names and doses. Mast cell mutations, mediator release, and risks vary patient by patient, so copying someone else’s treatment is usually ineffective and can be harmful. Every MCAS patients needs to go through the trial and error process individually.
Doxycycline has been known to help a small subset of MCAS patients due to its anti-inflammatory properties. Researchers are also briefly studied its effects on hEDS. However, mast cell researchers recommend trialing these first, second, and third lines of MCAS treatment under the guidance of a knowledgeable specialist first.
Adrenal insufficiency
Many MCAS patients need to take steroids as daily and rescue treatment literally in order to survive. Unfortunately, long term steroid use can cause many side effects, including secondary adrenal insufficiency, a condition in which the adrenal glands atrophy and/or produce less cortisol. Additional, MCAS itself may cause adrenal insufficiency. When your body does not have enough cortisol, it can go into crisis and you can die.
Although I no longer needed steroids for MCAS once my symptoms were in remission, my body was still dependent on daily steroids. Many patients with secondary adrenal insufficiency due to steroids are able to successfully taper their medication over months and years and their adrenal glands begin making cortisol again. (Primary adrenal insufficiency is a separate, rare condition.)
High intensity exercise requires a lot more cortisol, so it’s been a challenge to avoid adrenal crisis as a competitive athlete, let alone taper. It took me two years of hard work to taper off the steroid medication and regain adrenal function while skating. Read more about my journey with secondary adrenal insufficiency.
Support my work
Have my blog, videos, or graphics helped you? Do you want to help me to continue create resources to raise awareness about MCAS among patients, health care providers, family, and friends?
Support my work on PatreonI rely on patrons to help me pay for this blog, captioning, graphic design software and other tools! Your support demonstrates you want this blog to continue. You can become a patron for as little as $3/month and get access to patron-only previews of upcoming posts and projects, as well as personal updates about my treatment and healing.
Thank you to my existing patrons keeping this blog going!
My latest interview
Additional interviews
- November 2020: Finding Your Range with Jeannie Di Bon
- June 2021: Standing Up to POTS Podcast
- December 2021: Finding Your Range with Jeannie Di Bon
Disclaimer
This website is for educational and entertainment purposes only and not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of a qualified medical professional with any questions you may have regarding a medical condition.
All content contained on this web page is copyrighted. Feel free to share direct links, but please ask if you’d like to use text or a photo. I encourage re-sharing my social media graphics, but please tag me in the post if you copy and paste.
Contact me at hellsbellsandmastcells@gmail.com.