This last weekend I had what must have been a light case of food poisoning. I went to a festival because it was cool that day, and yes, I ate at a food truck. I don’t know if that is where I picked it up, but that’s what I’m rolling with. I spent Saturday night and all day Sunday sick.
I woke up in the wee hours of Monday morning scratching and itching all over my body. The only way I can explain what I’m dealing with is that my nervous system has gone haywire and is sparking. I am continuously itching all over my entire body, but in seconds it changes to another spot. Then another.
Urgent meds out of stock — everywhere
I spent three days taking diphenhydramine along with my other indolent systemic mastocytosis (SM) meds. It never eased up. The itching was starting to work on my mental health as well, so I went into the ER.
I was given two 50 mg IV diphenhydramine pushes and a steroid by IV. The itching localized to certain parts of my face: inside my ears and nose. It felt like it was close to my brain and scalp, until the IV meds wore off. Then at once it was back to all over my body.
Do you know how awful it is to be itching that deep into your ears and nose? It is horrendous.
The only possibility that I can think of is that the food poisoning triggered this flare up. I am in a clinical drug trial in Salt Lake City, Utah, and am on avapritnib. Two months ago, they had to increase my dose from 25 mg to 50 mg. I have had no side effects from the increase. I have not changed washing detergent, fabric softener, food choices, body wash or shampoo.
The ER doctor called my ISM doctor in Utah and spoke with him about how else she could treat me. I was given a prescription for cromolyn sodium oral concentrate to hopefully get me through this. I called 45 pharmacies all over the state of Louisiana and no one has it in stock — and no one can order it. They just tell me there is a shortage and that is the only information given. Not even a timeline of when it will become available.
So, day four of mental and physical suffering continues. I was sent a message from my specialist that I could call my local doctor and get him to write a prescription for an oral steroid and maybe that would help me. I am waiting now for the doctor’s office to open to make that call.
This is the first time I have been unable to get medicine I need. This is a scary situation, but mine is not life-threatening at this point. I guess theoretically I could get anaphylaxis if I get worse, but I have an epinephrine pen if that happens. I can’t imagine needing a life-saving medicine that works for you and then learning it’s on the shortage list.
I’m not letting it stop me
I have good news, too. In a couple of days, I will be heading out to attend the World Orphan Drug Congress in Boston. I will even be on a panel. I am so excited about this.
I can only pray and hope I can get this all behind me before leaving. If not, then I will just make it work. I can either be miserable here at home, or on the plane, at the airport, and at the conference. If I stayed home every time I had a flare up, I wouldn’t get too far away from the house. And I love to travel when the weather is cool and not too hot. If anyone is at the conference in Boston, I will see you there!
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