Hacker News Reader

Comment by rendaw | Hacker News Reader

I'm doing CedarCure. You're required to not exercise or bath/shower for 2h after taking, which is fairly difficult in the morning, so I asked the doc if I could do it in the evening instead (despite explicit instructions to do it in the morning). The doc said it was fine, confirmed by the pharmacist.

I should know better by now than to trust doctors to act based on research and not gut feeling, but I hope this doesn't mean the last year of taking it was a wash...

View on HN

a brand new study comes out and you're mad the doctors didn't know about it a year ago?

do you carry any of the blame on yourself since you knew there were explicit instructions but apparently waiting to shower or exercise was too much of an inconvenience for you?

Where did they say they’re mad?

The last paragraph heavily implies it

They explicitly fault the doctor for not acting on research that wasn't available.

If the medicine instructions didn't state that they should be taken in the morning it might be reasonable, but presumably the producer had some reason for including that instruction. Furthermore, the linked study implies that this effect was suspected before but not confirmed - it's possible and even likely that the CedarCure makers knew this and specified the instructions as such.

> There’s a really interesting phenomenon in the immunotherapy field that has been going on for what seems to be several years now

> All of this culminated in a really incredible review paper

(review paper references papers from multiple years prior)

And no, it's absurd to imply I do carry blame here. I'm not a medical professional and that's exactly why I asked two specialists for help understanding the criticality of the instructions... that's the point. Even if they didn't know, they could have deferred to the written instructions rather than coming up with an original conclusion.

If the reasoning in the OP is right, then one might infer that the evening is the right time to take it. The goal of cancer immunotherapy is to convince your body to treat the cancer as harmful. The goal of allergy immunotherapy is to convince your body to tolerate allergens. If you are more likely to consider antigens harmful in the morning and tolerable in the evening, then evening is better.

As a giant confounding effect, it seems that allergy immunotherapy might work, at least in part, by convincing your body to make large amounts of IgG antibodies to the allergen, and IgG antibodies are in the “kill it but don’t sneeze at it” category, which isn’t same thing as having your T cell population tolerate the antigen.

> I could do it in the evening instead (despite explicit instructions to do it in the morning)

Have either you or your doctor identified the reason for the morning recommendation?

Maybe restart consideration of timing there?

Doctors are going to take your practical need to break one part of protocol, to maintain the rest of the protocol, seriously. They can't resolve the practicalities of patients' lives.

I looked up CedarCure and what I found is that it is a pesticide. What is the treatment about?

It's an immunotherapy drug for cedar pollen allergy.

looks like a sublingual immunotherapy treatment for allergies to japanese cedar pollen.

OP is an insect going in for assisted suicide.

https://synapse.inc/medicine/9101/

I think you are misunderstanding a couple of things. The label for Cedarcure doesn’t have timed dosing, just says take it during the day. Furthermore this research article would actually indicate it’s better to take it in the afternoon for your particular drug, if there really is any connection. Which is still a crazy connection to make because you are complaining about a specific immumotherapy regimen finding not being applied to an allergy-style medication. Why not apply this logic to every drug that interacts with the immune system (which is all of them)? Furthermore as other comments pointed out, you’re mad your doctor didn’t know about a brand-new study that didn’t exist when they made a recommendation?

Doctor’s have a wide discretion and often get things wrong. But in your case, that’s not what happened. If anything your doctor actually got it right either by chance or intuition.

There is always an option what taking it in the evening is magnitudes better than not taking it in the morning at all because you skipped it because you need a shower.

Always remember what you are just an another patient with your own quirks.

For the drug I take every day (Levothyroxine), research found that evening was worse, but the explanation was poor compliance - people forget to do it more often compared to the morning. Same reason the contraceptive pill is less effective than you'd expect in real populations, compliance is poor. If you're the sort of person who can actually take it on time, every day, without fail, it's extremely effective, if you aren't, not so much. The choice to include "dummy" pills is because of improved compliance - remembering to take it every single day on the same schedule is just easier, so adjust the medication not the instructions.

What annoys me here is that these things are hidden - if the patient knows that compliance is better (ie their chance of staying with the medicine and so of getting better) does it really reduce said compliance?

What's hidden? Compliance means you directly benefit from the intended functionality. Like anything else in life you can insist on more documentation but most people don't care.

From a lazy search, the measures are to trigger a reaction, but not intense enough send you to hospital. Fasted state (first thing in morning) can enhance absorption and avoid interference with food. (hot) showers cause vasodilation and exercise causes increased heart rate, both which increase allergen absorption enough trigger adverse reaction. If you have taken it for a year, your doctor may probably not worry about a too-intense reaction.

I'm also taking dust mite immunotherapy and assumed this article applies to me.

Explicitly clear, but otherwise not overly specific, medication instructions would be best.

Say exactly what matters.

E.G. 'Take once a day at a similar time.' VS overly specific but not required 'take in the morning / evening / lunch / some other assumption that doesn't matter.' HOWEVER maybe "Take once a day with your first (full) meal." OR "Take once a day with your primary meal." might make more sense for medications that interact with food.

Yeah, that tension between convenience and protocol is so real and frustrating

Reply on news.ycombinator.com