Reporting Medication Issues (and Why It Matters)
Part two of this tutorial series can be found here on the blog and here on the wiki.
I mentioned a while back that I worked for insert medication company here and we take reports about our medication's issues. This is a follow-up to that offhand statement. If something wonky is happening with your meds, please report it. This post should sum up the following:
- WHAT to report
- WHY to report
- HOW to report
So let's go, shall we?
WHAT TO REPORT
Anything weird.
Okay, so maybe that's a little vague, but the important thing is you shouldn't just report if your medication is doing something bad. Sometimes you need to report the good stuff, the weird stuff, or just weird circumstances.
So all of these are reportable:
- you took your meds, and they made you dizzy.
- this is an example of a side effect, or adverse event. It's not meant to make you dizzy.
- you took your meds, and they gave you a rash.
- another adverse event.
- you took your migraine meds, and they gave you diarrhea.
- another adverse event.
- you took your migraine meds, and they helped your skin clear up.
- this isn't necessarily a bad thing! A lot of people wouldn't consider this a side effect or adverse event. It's certainly not adverse, but you should still report it: if this is helping your skin, there may be a mechanism we don't know about that can help more people with their skin. It's worth some research!
- you took your perscribed dose of meds, and it didn't do anything.
- this isn't a side effect, it's a non-event. We still count it as an adverse event, though, because clearly, something's wrong.
- you got your medication, and the package looks funky/meds smell weird/looks different.
- this isn't always a bad thing, sometimes it's just the packaging company changed. But it's still worth reporting, because someone may have stolen your meds in shipping and replaced them with dupes. This is another reason it's important to report non-events like the one above, because if your medication isn't doing anything, maybe it's not your medication!
- you were taking your mental health meds, and realized you're pregnant.
- ALWAYS REPORT THIS, both to the medication company and to your doctor. The company will know more about the medication and can help your doctor with next steps, but also -- if you're doing fine and the baby is fine, that medication may be safe for pregnant people to take.
- your cousin/aunt/uncle/friend/brother had one of these things happen to them.
- you can report on someone else's behalf! It's always better if you can give their contact info, but some report is better than nothing.
WHY TO REPORT
I mentioned some of this in the notes above, but to expound:
- pharma companies know their meds better than the doctors do (generally). If you're having a rare but known side effect, they may know how to treat it. Even if it's an unknown side effect, the scientists who created the compound may be able to help your doctor trace the cause/treat you.
- quality control issues may get you a refund, which is always nice.
- bad unknown side effects mean there's something the company doesn't know about their medication, and they need to look into what's going on. It may be an interaction with another med, your diet, or you got a bad batch.
- side effects that 'don't make sense' often can be connected to another mechanism of the medication (your body is using it in a different way). Sometimes this leads to medications being used for more than one thing. The most famous example of this is Sildenafil in Viagra, which was originally meant to be for heart issues and -- well, let's say the other function is commonly appreciated by its users. It does work for the heart, but it works for other parts... as well. Yep.
- Testing medication on pregnant people is considered unethical because if you're in testing phase, you don't know if it's safe for the baby. Instead, companies rely on reports of people who took it without realizing they were pregnant. If the babies continue to be okay, a body of data/reports can be built to show that the medication is safe for pregnant people to use. This takes a lot of data, so every report matters. If it does cause issues with the baby/pregnancy, that's even more important, because now we know people should definitely avoid it when pregnant. This goes for any other group of people not commonly tested on: report, report, report!
- if meds aren't working at the dose perscribed, there may be something different about the way you metabolize them. It's important for companies to know what could possibly affect uptake: if you feel no effect, someone with a different metabolism might overdose.
- medication gets stolen. Sometimes knock-off, fake meds are sold online, and those meds make it to pharmacies or grocery chains (please don't buy your meds on eBay. If money is an issue, I'm hoping to write a post about applying for medical help through pharma companies soon!). These 'meds' aren't tested or quality controlled, so they could make you very sick. If your medication is doing nothing/giving you weird side effects/looks odd, it's worth a look into whether they're actually your meds.
HOW TO REPORT
In general, the steps are:
- Look at insert or packaging of meds to find pharma company name
- Look up pharma company online. It's easiest to search "pharma company name adverse event" to find the form. I have a list of contacts for major pharma companies here.
- Fill out the form. In general, you want the event, who it happened to, photos if possible, the type of medication, and a contact for them to get back to you. If at all possible, the lot/batch number of the medication is super helpful, as well as where/when you bought it.
Always inform your doctor as well. If your event is urgent (side effect, took meds when pregnant) please immediately inform your doctor, and talk to them about reporting; your doctor probably can report with more detail than you can about your symptoms.
I did put a little Tutorial on the wiki, so you don't have to scroll through the archive to find this page every time! All the contact links are hosted on the wiki links page as well.
Thank you!
Reporting is super helpful, not just to you but to the scientists making the medications and to the other patients taking it. It's such an important thing, and I hope I encourage at least one other person to do it.