It has been a painful lesson physically and emotionally to endure drug failures. Each one I have lost more of my spirit – and undeniably more of my fight to want to keep trying new drugs. At the beginning, my body bounced back, as did my spirit from failed experiments. Lately my body is not bouncing back. My skin is scarred from the Gleevec, my stomach is wrecked from the Mestinon, and my spirit is damaged from the accumulation of all the recent failures. But this post is not a pity party for one, instead it is about my project that I started back in 2016 that I want to share.
Long before I was even diagnosed with Mast Cell Activation Syndrome (MCAS), my specialist had me embark on a project to try to determine if I was allergic to the ingredients in my prescription medicines. You see, if you go and look at the medicines you take, you will see a long list of excipient ingredients, known as fillers in layman terms. I am still astounded by the number of “fillers” that manufacturers put in their medicines and that the FDA actually approves. I understand that a couple of fillers are necessary to get the medicine down one’s throat but beyond that, for people with allergies, it is a very unnecessary practice.
So I put together an Excel file. One tab covered the ingredients, I would mark them active or inactive – the fillers would always be inactive. I had the name of the medicine on the top row and then the ingredients on the sides so I could cross reference. The end goal would be to see if I was ingesting any unique filler ingredients – and perhaps determine if I was having an allergy to any of them.
In another tab, I would gather specific information of each medication such as when I started taking the medication, the dose, the manufacturer, when I stopped and when I resumed (may or may not be relevant), if I changed manufacturers (may or may not be relevant – this would often lead to a new column in the other tab because manufacturers have different filler ingredients). I also included the half-life (as in how long it lasts in my system) and where I purchased the medicine. I also created a separate tab for all of my over the counter (OTC) drugs and completed the same documentation (OTC meds are full of fillers too!).
I kept track of symptoms including when I ran experiments (e.g., last year I took a brief hiatus from my one blood thinner but stayed on the other and during that period had in increase number of migraines; while it could have been coincidental as soon as I went back on the blood thinner the number of my migraines leveled off again, essentially indicating I was in need of both blood thinners). Warning: whatever you do, do not stop taking a medicine without consulting a medical professional first! I looked for patterns. Although I didn’t see any, I did share my findings and always discussed issues with my doctors when I added new meds or stopped taking any meds. And don’t forget that your OTC meds should be incorporated into your project too, you’d be surprised as to how much “junk” they too have, including your vitamins.
So yes this is a very tedious project. It requires finding out from your pharmacy who the manufacturer is. Then you need to go to Daily Med (https://dailymed.nlm.nih.gov/dailymed/) to look up the ingredients. The easiest is to type in the name of the drug in the search box and then look for the manufacturer. (Or you can use www.drugs.com.)
Back in 2016, I realized many of the drugs used the same fillers and I suspected that I didn’t have an allergy to any. But I sure was alarmed by the sheer number of fillers in each medicine. I did drop a few drugs from my list at the time as an experiment (all of this was done in collaboration with my specialist). I didn’t notice anything so I thought I was in the clear with the fillers. While this project didn’t specifically help my body, I did find it enlightening. (Note: patients with MCAS can have allergies to dyes, alcohols, and talc, which are often used as fillers in both RX and OTC drugs.)
But fast forward to November 2017. I had stopped looking up excipient ingredients for almost a year. I added a drug to my daily regime in February 2017 and never thought to look up the ingredients. It was a white pill, which I thought was especially innocuous. With having just been diagnosed with MCAS, dyes and other filler ingredients are known triggers for some patients. So I reopened this project. I was alarmed to see that this “white” pill had a BLUE dye as one of its filler ingredients. Unfortunately through this process I did learn that Medicare would NOT cover compounding. Compounding is the art and science of preparing personalized medications for patients. Compounded medications are made based on a specific prescription, in which individual ingredients are mixed together in the exact strength and dosage required for the patient so it can easily exclude allergens.
Compounding is also very expensive. I also learned that some pharmacies are NOT legit compounders. Compounding of medicines does NOT mean repurposing generics into powder. So be aware when you are looking into compounding options. Compounding should literally be the active ingredient and a safe filler or two. After a lot of searching in the case of this medicine I was able to find an alternative manufacture that used fillers that did not include blue dye. I am not sure if my body is liking the alternative or not yet as it has been in a tizzy for months.
Perhaps if/when I have more energy I will launch a project into why the FDA allows manufacturers leeway into using so many fillers. You don’t need dye to distinguish between pills, they are already marked with numbers and vary in size. Pills also don’t need to taste good, they just need to go down. If compounding can accomplish that, then why can’t the manufacturers. Let’s save money (and potential allergic reactions) by using less. Again, pharmaceuticals shouldn’t be a for profit business, they should exist for saving patient lives. While this project didn’t reveal an allergy for me, it was interesting and enlightening albeit frustrating. But it could help you figure out one so don’t let me hold you back and I am happy to help answer any questions you may have with your excipient ingredient endeavor should you choose to embark on one. I will admit that all my meds are dye free (and I specifically look for manufacturers that have the least amount of fillers and no dyes, especially now that I know I have MCAS). #sickbutstillsassy