If you’ve ever been downhill skiing, you’ve likely experienced a “yard sale”. A yard sale is when you not only crash into the snow, but your equipment catapults in every direction. More than a few times, I’ve longingly watched one ski sail down the mountain, while trying to muster the energy to untangle my limbs and hike 30 feet up the mountain for my poles.
The last few weeks have felt like I was bombing a mountain, speeding out of control toward an inevitable crash. I started a new medication, cromolyn sodium – my 7th medication trial. I started small, squirting one vial of the liquid medication into 8 oz. of water before lunch every day. (Super weird, if you ask me.) Although I received ample warning that the drug takes time to adapt to, many mast cell patients find it to be life-changing.
Well, it changed my life – for the worse. For weeks, I persisted despite severe reactions, telling myself my body needed more time. But then the reactions became debilitating:
- I temporarily lost my vision, saw flashing lights, and half of my body went numb. Several panicked minutes later, I remembered this is my body’s manifestation of a migraine.
- My chest pain became so unbearable I thought I might have to go to the hospital even though I knew I wasn’t having a heart attack.
- I couldn’t walk across my condo at times because my bone pain became so excruciating.
My yard sale moment was when I realized, flat on my back, I was out of food and toilet paper, and could no longer work, let alone watch TV. On a ski mountain, for the most part, you have to pull yourself back together. Sometimes, a kind passerby will throw you a piece of your gear; in this case, a friend brought me a rotisserie chicken. And then I slowly began recompose my body and life, quitting the cromolyn sodium and vowing never to ski that trail again. My doctor agreed.
It’s common for mast cell patients to react poorly to new medication and every patient is different. This is why, my doctor says, finding the best treatment can take many years.
I finally began to feel better yesterday. My swelling has decreased significantly. I have mobility and a chin again.
UPDATE: I started the brand name version, Gastrocrom and I reacted much less. However, in the end, I gave up on cromolyn sodium. So frustrating.
I’m so sorry you reacted so terribly to the Cromolyn. My daughter is 18 and has been on it for almost 4 months. She too has been sticking it out but I want to wean her off. She’s up to the 4 doses but hasn’t had any improvement and has been feeling worse. Her exhaustion and painful glands are constant again. Whereas prior to the Cromolyn she had some days of relief. We go back to her mast cell doc at the end of July. I’m hoping he can help more. He’s almost 3 hours away so the trip is a big deal. She’s pretty discouraged. She only eats rice, all meats, and some cooked veggies. Oh and she can tolerate sea salt potato chips made with olive or sunflower oil. Thanks for sharing. Your blog has been a blessing. Connecting with others makes one feel less alone. Hugs
I am going to try the brand name version, Gastrocom, next. My doctor says some people react to the generic.
I thought the only ingredient in both the generic and name brand is the cromolyn. Is that untrue?
The ingredients are the exact same and my doctor mentioned this. However, several patients have had trouble with the generic. Maybe it’s a reaction to the manufacturing plant? Regardless, the brand name is working for me, while the generic gave me violent reactions.
My email address was wrong before. So I’m posting again lol 🙂