Fevers, Fevers, Fevers....

[Sunfish]

thanks for your kind words sophia (and others of course) and while i'd never thought about it as such, you are SO right in that personal updates take an entirely different kind of energy than replying to other posts. (thus at least part of why my website is embarrassingly not up-to-date...)

and no, it's definitely not sepsis. sorry if i'd given the impression that there was a concern about that in the moment, but we all knew i'd be WAY sicker if that were the case. there was the underlying concern of if there were a small infection lurking somewhere it could become sepsis, but now that's simply shifted to the fact that if fevers are my new "norm" we won't have as good of a first warning sign if/ when infection is an issue at any given time (which, obviously, will happen sometime...not necessarily something big but i doubt i'll make it through life without something little creeping in at some point) which thus will make it harder to catch things earlier. three of the four times i've had sepsis though there hasn't been any warning until it's at a point of critical illness (which fits with the theorized etiology of my sepsis) so we'll still know if that is the case, it's just smaller things that may be harder to decifer. so we'll see...it's always hard for us to catch "little stuff" anyway b/c i don't tend to get specific symptoms for various reasons (i.e. i don't get any urinary/ bladder symptoms with a UTI b/c of loss of sensation so unless it gets to the point of kidney pain i only have generalized symptoms).

so yep, it stinks & is frustrating but particularly if the regular tylenol pushing helps it is far from the craziest thing that's come my way. i just think it's a really good thing that we don't know what's in store ahead of time b/c if someone had told me what was to come years ago i may have keeled over in shock. thankfully, however, that's not how things work so as things we never could have fathomed happen along the way we're able to deal with them as they come, bit by bit (though sometimes the bits do come to come quite rapidly in succession!).

melissa

[flop]

Hi Melissa,

thanks for the updates (basically ditto what Sophia and others said).

You mentioned the high price of tylenol liquid in the US, I'm just wondering if there may be other options than you having to use up energy crushing tablets.

Tylenol is a brand of acetaminophen, outside of the USA ithe generic drug is called Paracetamol. In the UK you can get lots of different brands of paracetamol and in several different forms. Personally I buy either supermarket-own-brand or whatever is on special offer and all brands seem to work just as well as each other. You may be able to find a generic liquid at a cheaper price.

More likely to get a real cost saving you would need to change to a different preparation. Options would be: a) crushing tablets, tipping the powder out of capsules or c) disolvable / soluble tablets.

(Please note I would not normally advise crushing tablets / opening capsules without talking to a pharmacist first - I know that it is ok to do this with standard paracetamol/acetaminophen as my sister can't swallow tablets so we have resorted to other tricks advised by my local pharmacist).

In the UK the capsules and soluble tablets are a bit more expensive than normal tablets but are still quite cheap. I think you can get 100x 500mg soluble tablets for about ?5 (roughly 20cents per dose).

It must be bad enough having to put up with the fevers without having to break the bank to pay for the acetaminophen. Would it be any cheaper if your PCP prescribed them in bulk?

Flop

[MightyMouse]

flop, in the US, insurance wont pay for Rx's for drugs that are available over the counter, even if in bulk.

Nina

[Sunfish]

thanks for the ideas flop. most are things i've been pondering & am sure i will be exploring them moving forward, particularly if the tylenol ends up being a daily staple. with occasional usage the cost wasn't something i ever thought about but in these past few weeks i started to notice it. i have tried one store brand of acetaminophen but it was significantly more viscous than the tylenol brand and thus was pretty tough to get through my J tube. it was doable but annoying and likely more risky in regard to the potential of clogging the tube too and, in reality, since it was a children's preparation, was hardly any less expensive b/c i had to use more of it than the adult preparation made by Tylenol. i'd be game for trying other store brands but i haven't come across any that are an adult preparation; as such i need a larger volume to get an adult dose and, in turn, the cost savings are little to none.

i have a really good pill crusher (after MUCH trial & error) so as long as i'm not in the midst of spiking a high fever it's really not too big a deal...i have to crush my midodrine & domperidone 3-4 times daily anyway as midodrine isn't available in liquid & domperidone costs significantly more in liquid form (i.e. 10 times as much) and isn't covered by insurance (as it's not FDA approved in the states). some capsules empty/ dissolve well (& safely) but some don't; ffor instance i know my there are some extended release forms of acetaminophen in capsule form that wouldn't be a good idea. so while i'll probably continue to look whenever i'm otherwise at a pharmacy or store that carries a good stock of OTC meds, for now i'm probably going to go with the crushing & keep liquid on hand for emergencies (i.e. if i wake up with a fever) as i have it pre-measured in syringes so it's the quickest/ easiest to get in me. my mom isn't helpful (or comfortable) in regard to scouting things of this nature & i'd rather not waste my few trips out here & there on a tylenol search so we'll see. honestly if it can keep the fevers at bay & my liver can tolerate it i'm more than happy to crush the pills; the tablets i have on hand crush/ dissolve (after crushed) pretty well so it compared ot dealing with the fevers the hassle is well worth worth it.

thanks again,

melissa

[Mrs. Burschman]

There's always the possibility that they could go away though, I would think. Sometimes I've worried that a symptom is my new normal, but then it gets better later. We can only hope!

I'm sorry that there doesn't appear to be an easy answer!

Amy