Cromolyn 101

I gotta write this to even comprehend it….

Okay so Cromolyn, or Gastrocrom [depending on if you have good insurance and can afford it] is this sorta medication for MCAS, Mastocytosis, Mast Cell Dysfunction, and basically any of the Internal Mast Cell disorders. It does work for the subcutaneous [skin] based ones, but we are just going to focus on the one I have.

Essentially its either a nasal spray or an oral solution that works to turn off the insane amount of Mast cells in the body. But that’s about all we know. As a result of this condition being extremely rare and most people who do have it have unusual symptoms that don’t always fit into a set criteria, testing this stuff didn’t seem to go as well as planned. Unfortunately with allergies or allergic like reactions, anything and everything can trigger them, including the treatment for it. So since 1987 there’s been something like 4 trial runs and testing and basically everyone had some kind of reactions. But that’s okay, the risk didn’t outweigh the benefit. So here is the tricky part. There are like zero directions on how to use this stuff The package isn’t clear, doctors aren’t always clear, and for a reactive system, thats dangerous.

So based on my own trial and error fail and now the progressive increase of this medication, I thought I should pass on the tips, instructions, reactions, and basically everything we learned in hopes it can help someone else. Because had I not reached out on a facebook group of people dealing with this, I would have had ZERO idea what I was doing wrong and could have seriously gotten hurt [well like cell activating sick hurt not a literal broken bone].

BASICS: Cromolyn is usually an oral solution you must DILUTE in order to take. it’s supposed to go on an EMPTY stomach 4x a day. Now for some of us with dietary problems and other gastro issues [basically everyone..] this can be tricky so try to schedule it out. It should be taken at the same time daily AS MUCH AS POSSIBLE. And you should NOT suddenly stop taking it. This medicine has a building effect which means you have to keep taking to see if it works and you cannot stop suddenly without risking a very adverse effect. YOU MUST DILUTE correctly. ONE SINGLE AMPULE is a full dose WHEN mixed with an additional 8 oz of water. It’s about a teaspoon full of Cromolyn liquid [this is important later]. So just remember 8oz liquid to 1 teaspoon dose.

To Use: This is where having someone monitor you and your doctor involved is VERY important. In some cases, you need the full huge dosage right away, but typically that’s way too much for a body to handle. You should [now again I’m NOT a professional, but I can read all the insane amount of information on this] ideally work your way up to the full 4 doses a day.

Here’s where I went WRONG: We didn’t have the 8oz or ratio instructions. My dad put it in like 3 oz of water and I chugged it down. Rinse and repeat for a total of 6 doses in 36 hours and suddenly I have heart palpitations, a tingly metallic tongue taste [I don’t have taste buds remember? So explaining this was hard. I described biting tin foil…], a seriously woozy blood pressure drop, dizziness, headache, I basically just tuned out and starting having some weird fainting like spells. This was an adverse reaction to the medication being too concentrated and too fast. Luckily, a family friend and long time nurse stepped in and told us to discontinue until we spoke to the doctor Monday. What’s key here is I could stop because we hadn’t built the effect yet.
NOW here’s how we fixed it: Titrate slower.

After speaking to the doctor they confirmed it was an allergic reaction likely to the quick increase in medicine etc. So to combat that we started by taking only 2 oz worth of the dose and slowly increasing by 2oz every few days. Here’s an example: Day 1- 2oz total of the solution consumed ONCE. Day 2- 4oz total of the solution consumed at TWO different times of the day. Day 3- 6oz total of the solution consumed at THREE different times of the day. And so on a so forth slowly increasing each dose from 2oz to 4oz and then each time of the day increasing, etc, etc, you get the point. But, and there is always a BUT, you cannot premix the solution and save it for later. So we broke out the ratio tool and measuring spoons. As long as the ampule of Cromolyn is not diluted, not refrigerated, and kept chilled, you can utilize the dosage during a MAX of 24 hours. [this means where you are taking 2oz at THREE times a day you will be consuming a total of 3/4 of a single Cromolyn ampule dose. This can help cut down the high cost of the medications. So again the ratio is 2 OZ water to 1/4 teaspoon of solution.

MAKING THE MIXTURE: The ideal way to make and dilute properly is to first put the ampule amount[ entire one or a portion as long as the RATIO works] in 1/2 of the water that’s slightly warm, then add the other 1/2 of water that is cooler for a room temperature liquid. This means if you are going tot AKA a 2oz dose you will NEED: 1 oz warmer water, 1 oz cooler water, and 1/4 teaspoon Cromolyn. Rinse and repeat. WATER ONLY- this stuff binds to anything else so empty system, no juice, just water.

SIDE EFFECTS: Well see there are a ton of those and it’s pretty hard to distinguish whats a reaction to the medicine, whats a reaction to just taking something, and what’s going to happen anyway, HOWEVER there are some common ones that you need to be aware of because they are actually the dangerous ones. Coughing, difficulty swallowing, chest tightness, rash and hives, wheezing, rash, and sometimes you do get a topical reaction. These you need to see a doctor. The common, NON dangerous ones are things like headaches, nausea, diarrhea, stomach pain, muscle pain, and sometimes a mild rash. So basically anything can happen etc. My blood pressure goes haywire when I take mine but we monitor to keep it safe.

The OOPS: So since we gave me a too concentrated amount you have to flush your system gently. In my case, the recommendation was to drink another 8ooz glass of water promptly, then a second over the following 15 minutes. This doesn’t mean a reaction or adverse effect wont occur but it should help. It can also “wash” out the positive effect but better safe than sorry. Eat something after the 30 minute mark as well.

The Takeaway: Basically this drug is supposed to work on Mast cells and calm the system down [AKA tell the two-year-olds running my body to calm the F down and get a job (they don’t really have a role at this point, they just keep pressing the GO GO GO ON ON On switch for panic mode inside)]. However, in doing so it can trigger other side effects as Mast cells are a bunch of unpredictable little fuckers. As with any new medication, talk to your doctor, speak to your PHARMACIST [they will save your life], and follow the directions given to you. Every single case is different. Every single side effect and symptom will be unique to each person so my experience is NOT considered typical or standard. I urge anyone going onto this medicine to make sure you speak with your doctor and pharmacist about ALL medications you are on, even if they say not to worry, as drug interactions are common and with Mast Cell Dysfunctions then can be much more volatile than normal. In my case I ended up with oral thrush from something and later learned I am just at a higher risk of infection because my body isn’t going to send the right cells to fight the right thing. As a result, we need to monitor all new symptoms closely and make sure to get treatment quickly.

All in all I’m glad this drug exists, just disappointed in the drug company for not trying to further research or develop this sucker. Even for a tiny population of us, this drug is one of the only treatments out there for a very fragile group.

Stay strong my friends