Most of my action suggestions have been intended to benefit the hypophosphatemia community as a whole, which can indirectly benefit you. But it’s also important to advocate for yourself, which can also have broader effects on the community as a whole by making sure you, one of the community members, is thriving!
Here are a couple little things you can do to advocate for yourself if you’re on burosumab:
First, I heard from someone recently who finds the use of bandages after an injection troublesome (painful to remove). I don’t find them painful, just annoying, so I’ve always asked that the nurse NOT use a bandage, and they’ve always been willing to skip it. And it’s really something they should listen to. After all, the skin-irritating nature of bandages and the risk of bleeding from these injections, based on past experience, are both things that the patient knows best.
Second, this is a small thing, but did you know that if you get a dose of burosumab that comes in three bottles, you can ask to have just two shots instead of three? The label is here (this is something they may understandably want to check for themselves, since it’s science, not patient experience): https://www.accessdata.fda.gov/drugsatfda_docs/label/2018/761068s000lbl.pdf Personally, I prefer the two shots, not because I care about the number of times I’m poked, but because it makes it simpler to rotate where the injections are done. With just two shots, I can rotate between arms and belly (one shot on each side of the body), but with three, it gets complicated, since I only have two arms.
Here’s the language from the label: “If more than 1.5 mL is required on a given dosing day, the total volume of CRYSVITA should be split and administered at two different injection sites.”
Each vial, whether it’s for 10 mg, 20 mg, or 30 mg contains 1 mL. So you can get 1 1/2 vials per needle, regardless of the dose (but keep the two doses the same amount). Just as an example, I get 70 mg, which is two 30 mg vials and one 10 mg vial. For two shots, each one is a 30 mg vial plus half of a 10 mg vial.
If you’re getting three shots and would prefer two, print out the label from the link above, and ask the nurse to do it that way. (The label will be in the box they have, but no one, not even nurses/doctors ever seem to read them in the moment.) They might want to look it up in their own drug database, so they might not be able to accommodate the request that day (and some nurses will draw up the dose before coming into the room), but you can ask if they’ll do it the way you prefer in the future.
I’ve been lucky perhaps, but the nurses I’ve asked have all been willing to accommodate the request. It helps to project confidence, and having the official label with you can make you feel stronger.
Similarly, if there are any other accommodations that will make a medical appointment easier for you, just ask. Sometimes it’s a really little thing, and the health care provider is happy to accommodate you, but wouldn’t necessarily think to offer the option. For instance, I am more comfortable standing than sitting, especially if I’m having a particularly achey day, so I’ll ask if I can stand during the injections (just lean against the exam table so I’m stable) and sometimes during regular appointments too. The only time I’ve gotten pushback was for blood pressure checks, especially if the first one, done standing, is high, and then they’ll insist on taking another while I’m sitting.
A lot of us have at least a little trauma from bad health care experiences, so it can be hard to ask for accommodations when we expect to get poor treatment, but that only makes it more important to ask if there’s something that will improve the experience significantly for you. If you’ve never asked for an accommodation before, try asking for something little, like skipping the bandages after a burosumab injection. Then you can work your way up to bigger and more significant things! Or, if the health care provider refuses to accommodate such a minor request, you’ll know that they’re a jerk, and can take other measures to get good care, either changing providers, or registering a complaint, or simply lowering your expectations, so you can more easily shrug off their poor patient-interaction skills.
I’ve suggested a few accommodations, but what about you? Are there little things that health care providers can do to make your experience a little better (or a lot better)? Have you asked for those accommodations? If so, what has been the providers’ responses? Let me know at Gin at ginjones dot com!
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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