(no subject)

[the_rck]

::snarls at the world::

Okay, pieces of today so far haven't been awful. Most of the day in fact. The weather's awful, and school's closed, but my doctor called me to take care of my concerns over the phone so that I wouldn't have to try to get downtown. It's one of those things that has made me stay with her for so long even with the other issues I have with her.

I'm even feeling a little better. My doctor strongly suspects, given the timing, that I had the bug that Scott did. She says that antibiotic side effect usually take a couple of days to get started. Given that my issues started no more than twelve hours after my first dose, she thinks it was the bug. I didn't get as sick with it as either Scott or Cordelia. I'm not sure if that's because my immune system was already up in arms fighting the strep or if the bug wasn't as viral as Scott was told when he went to the doctor.

The thing making me snarl is that my doctor called back to say that the pharmacy has informed her that they can't fill my rescue inhaler prescription because nobody's making that medication any more. I use alupent. I've tried albuterol several times in the last twenty years, and it's never been pretty. The side effects aren't as bad as ceasing to breathe, but they are worse than spending an hour or two coughing after being out in the cold or having to walk out of restaurants at the first whiff of smoke or incense.

I'm very frightened of what happens the next time I get asthmatic bronchitis or anything else that sets off a prolonged problem. It's only happened three or four times in my life, but those occasions are all in the last ten years, three of them in the last five. When that happens, I end up using my rescue inhaler fairly constantly for weeks. During those bouts, I use inhaled steroids, too. I need both.

This isn't going to mean big changes in my everyday life. I use my rescue inhaler maybe once a month under normal circumstances. It's just going to mean that there are chances I can't take. For example, my brother-in-law and his family want to try to fly us out to Seattle to visit. They've been telling me that they've kept their cats out of the downstairs of the house and that that area should be 'cat-free' and safe for me to stay in. With a safe rescue inhaler I might consider trying it. (I'm still dubious that space that shares the same heating/cooling ducts and general air circulation is going to be free of an air-born allergen, and I'm allergic enough for it to be a big risk with a good inhaler, even if it's just the risk of having to pay for a hotel room for the whole of the stay.)

Admittedly, I've only tried albuterol a few times. I used it for two days in the 80s. I was given it for a reaction to an allergy shot in the 90s (without being told what it was). I was given it in the ER for asthmatic bronchitis about three years ago. The first two reactions were clearly bad due primarily to the medication. The third...I was sufficiently sick at the time that it's hard to tell what was the medication and what was the illness. It helped me breathe a little better, I think, but the side effects left me feeling quite as bad as I had when I'd come in. They held me overnight in hopes that they could get me to sleep, but they kept putting more albuterol into me (I'd specifically told them not to, too. I only found out after the fact that, after the first treatment which was something else, they went back to albuterol).

Does anybody else out there have problems using albuterol? Do you have advice for alternatives? For decreasing the side effects? (I get a racing heart that feels like it's trying to escape my chest. I shake to the point that talking is hard, 'tremors' in my back and chest basically. My anxiety goes up which is hard to do when the normal level is somewhere in the stratosphere.)

::sighs:: My doctor's referring me to a pulmonologist in hopes that there's a solution. As long as I take Singulair every day, my asthma is mild 99% of the time. I've got time to look for options.

Comments

[lady-of-mists.livejournal.com]

I'll be hoping that someone comes up with an idea for a different medicine for you at a doctor's office (or that someone else has a good idea). Unfortunately, I don't have any when it comes to asthma because that's not been my family's health care problem (see diabetes or cholesterol). The most I remember was about a sinus problem that my grandpa had that required him to move and get an operation to fix it -- but I wasn't born at that point, so I'm fuzzy on the details. And sinus problems don't equal asthma. :(

[the_rck]

Thanks for the good wishes. I'm still hoping. I'll see the pulmonologist on the 12th of January. (At least assuming I can figure out what to do with Cordelia during the appointment.)

[jenett]

Albuterol in a nebuliser is a very different thing than the inhaler for me - the nebuliser's both more medication *and* because of the delivery method, it hits the body differently.

They've also switched to a new propellant in the last couple of years (due to regulation changes in propellants related to global warming/climate stuff.) The new one is pricier (mine was $30, instead of something like $9 previously) as it's not yet a generic.

That said, there's some bonuses: the new propellant hits me differently. With the old one, I couldn't take it in the evening if I wanted to sleep, and I couldn't wake up in the middle of the night and take it and fall back asleep. (I didn't get the jittery issues unless I took it for at least a day or two running) With the new one, I can (though I'm still a little nervous about it.)

Like you, I don't take it often - and the herbalist stuff I've been doing has helped a lot (and kept me off steroids, which I have *miserable* reactions to.)

I'd see if the pulmonologist has a sample you could try or something - see how it affects you.

[the_rck]

What herbs help you? I don't know that I'm ever going to be willing to do the necessary work to educate myself enough to use herbs safely, but I'm always curious about what works for other people.

Steroids and I are not a happy combination. They tend, even in inhaled form, to increase my reflux which can make the asthma worse. I also don't seem to lose the steroid weight after I stop taking the steroids.

I expect I will ask for samples. I've had so many weird side effects and difficulties that buying isn't going to be a good idea.

I think that the shift in propellants has driven some marginal medications, things not used by many people, off the market. The manufacturers decided that the expense and hassle of switching propellants wasn't going to yield adequate return. My doctor did some research. Everything she could find available for purchase was albuterol based. Other medications exist in theory, but nobody's selling them in the U.S.

[jenett]

This is one of those "I would see an herbalist about" things, because there's a bunch of different root causes for lung issues - herbalism and naturopathic medicine treats (as I'm sure you know) based on cause, not on effect, so where allopathic medicine says "Oh, lung issues, here, try this inhaler." the process is more complicated for the naturopathic stuff.

In my case, my herbalist noted liver and kidney issues which combine to reduce energy circulation to the lungs and lead to stagnation issues. The end result is that if I get a cold, I do some combinations of things (I usually go heavy on the thyme) to kill the infection, and also start taking pleurisy root for the coughing. And we do some other stuff in the fall to help avoid issues at the time I usually have the most problems (fall pollen allergies + mold allergies make the fall the worst for me until the first hard frost or two.)

Pleurisy root is my friend: it's named for exactly the kind of cough I get (moist and gunky in the bottom of the lungs, dry and a bit hacking as it gets up to the throat.) I only take it if I'm getting a cold or if I'm getting over one: I stop adding it in to my regular herbalist blend once I stop coughing. It clears up the cough much faster, and means my lungs never get as miserable and tight and messed up.

(This cold I got in November was nasty - but even with it, I was able to do substantial walking the first week after I got over the bulk of the rest of the cold, and I've been coughing but not miserable since. I'm almost over the coughing, now.)

The other one we've used - mostly to help with allergies - is mullein, which I think helps discourage the allergic response and inflammation, and so can help help sidestep asthma issues that way, too.

The regular herbalist blend I take is mostly focused on boosting the liver and kidney healing, and on fixing some of the hormonal issues. The first part also helps the lungs, though as a sort of secondary effect (less stress on the body = lungs less likely to panic.)

My steroid issues aren't so much the weight (though I'm pretty sure it didn't help other metabolic issues) but the fact I've had psychotropic effects (specifically, fast-cycling mood swings if I'm on them for more than 3-4 weeks) on every one we've tried me on, which is most of the milder ones. My sister has the same problem, and has had good luck on Singulair, but really, I don't want to test it if I don't have to.

[the_rck]

How would you evaluate the general competence of an herbalist? I've been hesitant because I'm afraid of getting someone who'll claim to have a grasp of things like medication interactions and not actually have it. I definitely don't trust my doctor to have any clue on the subject.

I'd be curious, though, to see if an herbalist would have an opinion on the aspect of my big asthma troubles that has made some doctors think I'm crazy-- Before I started taking Singulair, often my first cold symptom would be my chest getting tight, even for colds that started in my sinuses.

[jenett]

It's tricky, because there's no standard training - in my case, I'd known her through the Pagan community casually for several years, and I knew a number of other people who'd been to her (and who a) had found it helpful and b) were not dead or otherwise injured by it.)

What I'd look for (and this may be tricky for you, I admit) is a really well stocked natural foods store or herb store (i.e. place that sells lots of dried herbs and related stuff, not just the 40-50 most common ones, but up in the hundreds). And then ask them for recommendations, and ask about training.

The other option would be to see if you can find someone who's trained in Traditional Chinese Medicine - which does have a more useful structure in the US as far as who uses the name, as I understand it. Somewhat different set of approaches, and different herbs in some cases, but the same basic concept of looking at holistic balance and imbalance in the body.

Liz, who I see, is definitely very careful about med interactions (far beyond the point most people might be: whenever we go through stuff in class, she's careful to mention the major interactions to us, even though they're also prominently listed on the jars as well.) Her training is through a distance program, ongoing training with a number of local herbalists, and she did some Traditional Chinese Medicine training a few years ago.

The lung thing doesn't strike me at all weird - I don't quite get that, but I do get some similar stuff that is weird by allopathic standards, but that keeps getting mentioned in my herbalism classes, so I go "Oh, *duh*".

[the_rck]

The lung thing doesn't strike me at all weird - I don't quite get that, but I do get some similar stuff that is weird by allopathic standards, but that keeps getting mentioned in my herbalism classes, so I go "Oh, *duh*".

I actually remembered to ask the pulmonologist I saw yesterday about the lung thing, and he was utterly unsurprised. He said that any infection in the sinuses affects the large airways in the lungs pretty much instantly and that it's perfectly normal for someone who's used to paying attention to what their lungs are doing to notice that first.

Which kind of underlines my determination not to see the particular doctor who didn't believe me on walk-in ever again. He's not my primary care doctor. His specialty is bone and joint injuries. He just covers a lot of walk-in time because he's willing to work lots of overtime and because the stuff he's best at tends not to easily delayed for a day or four while someone waits for an appointment. (There are several other reasons I don't want to see him again. This was just the final straw because, if he'd started me on preventative measures when I came in asking for them, I might have avoided several weeks of severe illness.)

[kyrielle]

When I had asthma (mine was childhood and went away), I used it. I didn't have trouble with it until I was nearly grown. Then I found that instead of using two puffs as they say, if I used one, my heart would race unpleasantly but not as bad. But my reactions were mild enough that I could afford to, by then. I don't get the impression that that applies to you.

Definitely time to go back to a specialist and see what else is out there. Hopefully by now they have more options for you (even if it's just something where you have to take the albuterol at first, then follow it up with something that's intended to address an ongoing attack but slower to act - I don't know if such a thing exists, but...).

ETA: Also, I'm sure you would and do anyway, but make sure they know that once you get into that state you have ongoing attacks for a while. That's not true of all asthmatics (it wasn't of me: acute attacks were addressed with albuterol, and one or two puffs and that was it as long as I didn't continue to expose myself to whatever triggered it). I'm sure they're considering that scenario, but...just in case.

[the_rck]

The difficulty I have is that, when I really, really need the inhaler, I need it non-stop for days or weeks (three months is the longest period). When I'm really sick, I'll actually wake up every 4-6 hours as my breathing gets worse.

I think that I could tolerate albuterol for single dose issues, the times when I've been out in the cold too long or have been exposed to a perfume or smoke or whatever. Those don't come up very often because I'm careful.

I do take Singulair every day. It's supposed to decrease my vulnerability to the prolonged attacks, and I think that it does work. I've gotten colds while on it without having them get into my lungs. I'm just afraid of not having options when a cold gets past that defense.

[kyrielle]

Yeah, I get that. I suggested what I did to make sure your doctors get that. There may be "acute" medicines that are slower to take effect but would have fewer side effects, if you used them paired with the albuterol, for example. I don't know - there's hints on the web that suggest that such is the case (and they're not talking about the preventatives, like Singulair, as far as I can see), but I don't know how much of that is crap - the internet is full of it, after all.

[the_rck]

::nods:: I'll do my best. I'll be seeing a pulmonologist on the 12th, assuming I can figure out someone to take care of Cordelia. I'll be sure to ask him.

[danipuff.livejournal.com]

My sister had the same problem just recently (flare up of bronchitis) and she said using a spacer then a quick rinse of her mouth afterwards helped quite a bit in cutting down of her reaction (jitters, racing heart, and a bit of hyperness, i guess that's the word for it). I would stick with trying to find a new inhaler and only settling on albuterol if it is the very last thing you can do then see if using a spacer helps (if you don't already use one, that is).

[the_rck]

Thanks for the advice. I do use a spacer already. I've not tried it with albuterol though.

[anderyn.livejournal.com]

I use albuterol and a spacer, and have only recently gotten that kind of reaction -- but since not breathing is more miserable than "panic attack" feelings, I haven't really addressed it with my doctor. Let me know if you find out anything useful.

[the_rck]

I will let you know.

[leorising1959.livejournal.com]

From this article (http://www.webmd.com/asthma/features/asthma-rescue-inhaler-cornerstone-asthma-treatment?page=3) in WebMD:

Along with albuterol, other short-acting beta-agonists are available by prescription, including levbalbuterol, metaproterenol sulfate, pirbuterol, and terbutaline. These drugs work by relaxing the bronchial smooth muscle in the lung, opening the airways and allowing more oxygen in as you breath (sic).

There are alternatives. It was a good article.

I hope you feel much better -- soon! ^_^

Edited to add the actual link. *facepalms*

[the_rck]

The difficulty, from what my doctor said, is not that alternatives don't exist at all. It's that nobody's selling them in the U.S. for various reasons. She said that every single purchasable medication she could find information on used albuterol in some form. She can prescribe alternatives, but they do me no good if the pharmacies can't get them.

Thanks for doing the research, though.

Right now, I'm hoping that the pulmonologist will know of something that's actually available. I'd expect him/her to have more ideas. Then again, the last time I talked to a pulmonologist, I got the impression that my issues were (in his opinion) too minor to be worth his time.

[leorising1959.livejournal.com]

Holy crap, that sucks! Certainly poor planning on the part of pharmaceutical companies -- you couldn't possibly be the only person in America who can't take albuterol, grrr... Stupid, stupid system! *rages*

FWIW, there's a Chinese herb mixture made by Seven Forests, which is run by a man who is an acquaitance of mine. 7 Forests are the highest quality Chinese herbal mixtures, or "teas", you can find on the market, so I feel very confident in recommending the brand. The specific "tea" is called Blue Earth Dragon, and runs about $15 for a month's supply.

Cautions about Blue Earth Dragon: it contains ma huang, a/k/a ephedrine, which can be rather speedy, and should be taken long-term under supervision. It is, however, an important and time-honored ingredient in this formula. In my experience, as long as the patient is having asthmatic symptoms, it's okay to use, but then again, I keep an eye on the people I recommend it to that way.

If you have an acupuncturist or TCM practitioner, go to them and get this herb. One of its more amazing qualities is the transformation of phlegm: you don't have to cough up a bunch of mucus all the time, much of it just "disappears", dissolved by the herbal formula.

The BF has bad asthma and smokes besides, plus he takes advair and a rescue inhaler. Blue Earth Dragon helps him a lot. I highly recommend you check it out.

Good luck! ^_^

[the_rck]

Thanks for the information. I'm saving it off.

[booniverse.livejournal.com]

I try not to use the rescue inhaler unless I'm having a singularly bad time of it because I get similar symptoms. It too is albuterol and it too makes my heart race and makes me shaky. On the other hand, when I do take it it's usually because I'm noticeably breathing "thickly" (it feels like my lungs shrunk about 25%) and my heart is doing some sort of weird skip beat tango. I'll take shaky and racy over irregular heart beat and trouble breathing (those freak me out more, actually). *shrug*. I asked the doc about that and he told me that albuterol is a stimulant which opens the air ways and increases your heart rate to circulate the limited air faster. And also probably a steroid. I can't remember which inhaler is what.

[thette.livejournal.com]

No, albuterol is not a steroid, it's just a beta 2 stimulant.

therck, you're not alone when it comes to side effects. Many people get those, and it's due to the way the medicine works. If you're having better luck with orciprenaline (which is a beta 1 and 2 stimulant), there's isoprenaline with a similar effect. It's also possible that you can function better with another selective beta 2 stimulant. Terbutaline is rather common.

[the_rck]

From what my doctor said, it's not that she thinks other medications don't exist or wouldn't work. It's that she can't prescribe them because nobody's selling them in the U.S. There are some changes to what's being allowed for inhaled medications, and the people who used to make alupent (and other alternatives to albuterol) seem to have decided that there's insufficient profit in making the required changes in order to legally sell their product. If nobody's selling it, I'm out of luck.

It doesn't help that our prescription coverage is more and more pressuring patients and doctors toward using only specific medications for given problems. In some cases, insurers will only pay for one particular medication for a given chronic problem. In other cases, insurers require patients to pay more for less commonly used or newer medications. I've run into the latter for GERD, asthma and migraines. I believe my insurance also does that for cholesterol medications, blood pressure medications and diabetes medications.

[the_rck]

Most of the time, I don't need a rescue inhaler. I just occasionally hit periods when I need the dratted thing regularly, every 4-6 hours, for days or weeks at a time. During those times, I'm very sick and get worse when I miss a dose. It's terrifying.