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Sometimes, the process of elimination in terms of finding the correct diagnosis for one’s chronic symptoms can feel like a triathlon. This is especially true when the diagnosis process is attempting to identify a rare disease. For me, this process felt like running through ruts, biking uphill, and swimming through murky waters. 

When my journey culminated with a diagnosis of systemic mastocytosis (SM), my symptoms had already become a big problem. Throughout my life, there had rarely been a need for medication. The vulnerable, scared state left me tearful in front of my provider begging for help.

Initially, the laundry list of symptoms was overwhelming for my provider. He assessed tremulousness, tachycardia, flushing, hypertension, inflammation, and profuse sweating as likely psychosomatic in nature. To start, he prescribed a 0.1 mg dosage of clonidine for anxiety-related hypertensive episodes. Additionally, Zofran 4 mg was prescribed to assist with nausea and vomiting. He also ordered a full blood count to cover the bases.

Having been warned about the sedative effect of clonidine, I held off taking it for one day to be safe before work. While at work, an episodic bout of my symptoms arose with prospective clients and a full showroom of people in front of me. I was rushed off to urgent care and then to emergency care. Upon arrival, these caregivers pushed the same psychosomatic diagnosis. I was regularly offered anti-anxiety medication. Nothing was offered for my extreme nausea. Knowing myself and how anxiety manifests within me, I knew this was not psychosomatic. 

Within 2 weeks those symptoms had amplified to a level of immobilizing. With a history of PTSD and my life coming to a sudden halt, I started to believe it was possible it could all be panic disorder. After all, who really knows? Cymbalta 20 mg was added into the mix with the benefit of some pain relief, too. Over the course of 4 months, my dosage went up to 40 mg before I decided this was not the medication for me. It added to my sweating, sleep irregularities, flushing, inflammation, nausea, and weight gain. Tapering off was a 2-week monitored process due to the severity of side effects.

Read about experimental therapies for SM

Clonidine was far too heavy a drug for me so propranolol took its place at 20 mg thrice times daily. This dosage eventually increased to 30 mg thrice times daily with an added extended release 80 mg tablet at bedtime. Propranolol had been beneficial for my blood pressure and heart rate for about 6 months in total. However, the continual need to increase the dose may counter that statement. When it had proven ineffective, I advocated for its removal. The process of tapering took over a month.

In and amongst these medications, I had several severe allergic reactions requiring steroids, and other antihistamine interventions, and was prescribed EpiPens®. The steroid of choice seemed to be prednisone. During the 7-day dose, my body felt heavy. Shortness of breath, edema, lethargy, nausea, and presyncope were daily side effects, with occasional hive outbreaks. Migraines became an issue for me so indomethacin 50 mg was prescribed. As it turns out, that medication triggered an allergic response. 

Topamax® took its place. Only after the 2-week adjustment period, did it become effective. After seeing a dermatologist regarding the skin interactions, I was prescribed 2 different creams. Both caused severe allergic reactions. More prednisone, too. After many more diagnostic evaluations, there was a mention of mastocytosis. A conclusive set of lab results brought about a whole new gambit of drugs to try. Antihistamines, H1 and H2 blockers, and mast cell stabilizers. 

Another game of mix and match with these medications. Trial and error, case by case. Oftentimes, the appointment with a specialist was spent discussing the legitimacy, reality, and lastly my needs relating to mastocytosis. Some of these classifications of drugs are not suited for everyone either. Cromolyn eye drops, for example, caused trigger reactions in my eyes, lymphatic, and respiratory systems. 

Presently, my regimen includes 16 pills a day before any vitamins or added medications needed for pain or other symptoms. Maneuvering and managing this load of medications is no small chore. It is a full-time job in conjunction with self-advocacy and research on better methods of management. All while adjusting lifestyle, diet, and routine, and balancing mental wellness with sudden change.

It is my recommendation from experience to always review the risk vs reward of medications. Consult your doctor, pharmacist, and others who are familiar with the drug or the disease you are dealing with. For those of us with SM, it can be life or death.