flwyd: (farts sign - Norway)
My employer-sponsored health plan has a "specialty pharmacy" insurance which is separate from the ordinary pharmacy benefits. Painkillers for surgery post-op, antibiotics when you're sick, prescription NSAIDs for chronic inflammatory disease, and all those other medicines that come in an orange plastic container are reliably dispensed by my local King Soopers pharmacy with what I would describe as a high level of competency. Other than "we haven't filled it yet, can you come back in an hour" I haven't had any problems acquiring or paying for any of these medications for fifteen years.

The "biologic" disease-modifying drug I take for psoriatic arthritis, on the other hand, is considered a "specialty medication" which means it's paid for by CVS Specialty Insurance, filled and delivered by CVS Specialty Pharmacy, and picked up at my local CVS Pharmacy. Despite all having the word "CVS" in the name, as far as I can tell they're three separate entities who are almost incapable of coordinating with each other.

Drug manufacturers have learned that they can charge a lot of money for biologics. But if they charge too much money, patients with a 10% copay will balk at the price, avoid filling the prescription, and the drug company will miss out on the other 90% that would've been paid by insurance. So they came up with a way to hack the U.S. health payment system: offer patients a "co-pay assistance" card, which is basically a persistent coupon lowering your out-of-pocket costs to almost nothing. Patients will then keep filling the prescription because it's basically free, leading to something of a principal–agent problem where the person making buying decisions has no incentive to consider the cost of the item. My employer ends up footing the bill, but I'm only annoyed with this situation in principle: in practice I get free drugs. (My employer benefits too, because I was not very productive when my symptoms were causing problems and I wasn't taking the drugs.)

In late January or so of this year, I received notification that starting April 1st, our CVS Specialty Insurance plan would no longer cover Humira—the name-brand adalimumab—and would instead be covering Hyrimoz, a cheaper generic adalimumab. This seemed like a bit of an unfair move, since employees can only change decisions about health care plans near the end of the year, but as a fan of generic medicines this seems like a sensible choice. However, although this change was announced in January so people could start worrying about it, we couldn't actually take any action like getting a doctor to change prescriptions for more than a month. Come mid-March I called CVS Specialty Pharmacy to fill my new Hyrimoz prescription, but was told that since CVS Specialty Insurance didn't cover it until April 1st I couldn't actually place an order until April (including "place an order in March for April delivery"). This was rather inconvenient, since I was leaving town for two weeks starting April 1st and didn't want to spent my road trip vacation arguing with pharmacy customer service people when things would eventually go awry. The customer service rep did inform me that I could set up the co-pay assistance card in advance, though. After several attempts to use the drug manufacturer's website that had some technical hot mess I can't recall, I finally got a PDF that had two sets of discount code numbers on it, one "for NDC starting with 61314" and one "for NDC starting with 83457." As a health insurance policy holder I still have no idea what NDC stands for, nor how I would figure out which of those two apply to me. I relayed this to the person at CVS Specialty Pharmacy who suggested she take down both sets of numbers and put them both in their system so they could figure it out once the prescription actually gets filled.

Come April I was able to order a 3-month supply of Hyrimoz, plus a bag of alcohol wipes and a sharps container. I was somewhat surprised that the medication was delivered without much issue, given my prior experience of organizational incompetence ordering Humira. When I tried to pick everything up, though, the retail CVS Pharmacy folks were getting some indication in their system that they shouldn't hand over the sharps container and alcohol swabs, so I walked away with a couple thousand dollars of medicine and not ten dollars worth of common medical supplies ¯\_(ツ)_/¯ (It only took a day or two for them to realize I could take a sharps container to dispose of the future medical waste they handed me the previous day.)

A few weeks later, someone from CVS Specialty Pharmacy billing department called and informed me that I still hadn't paid my copay for that order. I was surprised, since I'd given them all the information on the card which claimed my copay would be zero dollars. I think we discovered that there wasn't a card on file, so I gave both sets of numbers again and the rep said she would rebill. Problem solved? Hardly. I don't recall the exact timeline, but when I attempted to refill the prescription in the early summer I discovered it was on hold because the prior order hadn't been paid. So I called CVS Specialty Pharmacy; we went through the numbers again, and she determined that based on the diagnostic code from CVS Specialty Insurance the code for the wrong NDC was in their system and she didn't have the other code, so I re-provided all the digits. After some time on hold she confirmed the order had been rebilled.

So imagine my surprise this weekend when I was sorting through an accumulated pile of mail and discovered that the charge from April had been sent to collections. I called CVS Specialty Pharmacy this morning, and pointed out they had a discount card on file. The representative said they would rescind the bill from collections and rebill insurance. Will CVS manage to pay itself this time? Who knows! The two companies seem to share the same name but otherwise lack the ability to communicate effectively.

Payment aside, order fulfillment and delivery is also a comedy of errors. In early September I received a text message from CVS Specialty Pharmacy that said my prescription was ready to be refilled, but when I went to CVS Specialty Pharmacy's website it said I couldn't refill for another week and a half, and once that time passed I could only schedule delivery for another week and a half later. When I arrived at the retail CVS Pharmacy I was handed a large paper bag that was wet and soggy on the bottom. This contained a cold bag with three ice packs and a single box of medicine, 90 alcohol swabs, and three sharps containers. It's unclear to me whether the Specialty side (which distributes this temperature-controlled medication from a warehouse somewhere) or the retail side (which keeps medicine in the refrigerator until I pick it up) were the ones who decided to keep sharps containers and alcohol swabs should be kept refrigerated, but I'm quite glad I didn't pick this one up on a bicycle commute day because that bag was a wet mess. More importantly, I was rather miffed at CVS Specialty for taking my "Please send me three months worth of medicine, alcohol swabs, and a sharps container" into one month of medicine, a year's worth of sharps disposal, and three years worth of swabs. The order sheet says "2 ml" of Hyrimoz, and each box contains two 0.4 ml pens, so it would take two and a half boxes to match two milliliters of medicine; I only got 0.8. I attempted to call CVS Pharmacy retail about this problem, but every attempt to use their phone tree's "Leave a voicemail and we will call you back" feature resulted in the computer voice saying they were sorry. So I stopped by the pharmacy in person to tell them (1) file a ticket to get your phone system fixed and (2) you didn't give me my whole order. The pharmacist explained that they could view and dispense CVS Specialty Pharmacy orders but couldn't do anything else like investigate why it was wrong, so she gave me the phone number for Specialty. You guys are both CVS Pharmacies, why can't your computers talk to each other? Another call to the other CVS turned up the fact that two prescriptions, one for a one-month supply and one for a three-month supply, were both in the computer system, and the system automatically selected the first and billed insurance for it. She said she put a note on my record to do the three-month supply next time, and assured me that I would be able to place that order in October. I've a rather sneaking suspicion that they'll manage to fumble something again and I'll have to take another adventure through their customer support lines to convince their computer that I'm eligible for more drugs before December. (I discovered my previous order sheet this evening which says it was filled for 6 ml, which would be a 10 week supply rather than a 6 week supply. I guess I shouldn't be surprised that CVS Specialty can't even get arithmetic right.)

I wonder if it's occurred to the folks who run my company's benefit plan that I'm not doing anything productive for the company if I spend half a day getting derailed by systematic incompetency every few months.

Can I Hear You Now?

Saturday, June 2nd, 2018 11:41 pm
flwyd: (intense aztec drummer DNC 2008)
A couple weeks ago I had a really stick neck, tightness in my jaw, and pain in my ear. I'm certain that all three of these were related, but I'm not sure which was causative. I'd spent a long weekend in a hot spring at the end of April, and my right ear had felt like it had water in it for a while after that, so I figured that might be involved.

After a difficult day at work due to on-and-off headaches due to the ear pain, I put hydrogen peroxide - urea drops in my ears and irrigated with a bulb. This had been the prescription 5ish years ago when I had some persistent ringing in my ears and an overabundance of earwax flushed out by a PA at my doctor's office. It had also worked wonders on my trip to California in February when my ears felt clogged, the pressure changes on the plane were intense, and I had trouble focusing in an all-day meeting because of headaches coming and going and noticeable tightness in my neck muscles.

The drops and irrigation seemed to help for a couple days, then two weeks ago Friday the dull headache quickly shifted into a "You will devote almost all of your attention to the sharp pain in the left side of your head." My task on Friday is reading interview packets and then participating in hiring committee. After struggling through the first packet I realized that there was no way I would be able to make it through another four hours of reading and talking with this level of pain, so I called my doctor's office and asked the meeting coordinator to hand off my other packets.

At the doctor's office, I rated my pain an 8 out of 10. An NP inspected my ears and irrigated with a fancy bottle and warm water, which was more effective than the bulb dropper. A rather large chunk of goo came out of my left ear, and after sitting still for a moment to readjust my balance I felt major relief, right back down to a 2 or so on the pain scale. She recommended using the hydrogen peroxide drops for 3–5 days to get residual wax out and I biked home. I felt so good when I got home that I messaged the coordinator and said "Hey, I can read again, can you give me a packet back?" In my history of injury and illness It's very rare that a treatment takes effect that immediately; even the morphine I got when I broke my arm took longer to kick in, and didn't dial things down that far.

The next day I had another intense ear headache after several hours playing Magic and sadly opted not to go out to see Godspeed You Black Emperor!, since the artful amplified distortion of post-rock didn't seem like a great idea when your ears already hurt. Back home to lie in bed with peroxide making popping sounds as it combats wax.

I didn't have any more sharp pain, but over the next several days my ears felt pretty clogged. At first I figured this was residual ear wax, but fingers and Q-tips weren't pulling much wax out. I have the perk of being married to an NP; Kelly looked in my ears with her otoscope and noted that she couldn't see my ear drums, but everything looked pretty inflamed. I called the doctor's office and got in to see another NP who confirmed that it didn't look like wax, but wasn't sure just what to do. Hypothesizing that it was bacterial, she prescribed ciprofloxacin drops in each ear twice a day (possibly to be combined with Flonaze to combat inflammation), then come back for another irrigation.

Cipro ear drops are apparently an infrequently used medicine. My usual King Soopers pharmacy didn't have any, and sent me to the Louisville location. After a day of taking the drops I realized there were only 14 dropperettes in the package, which only covers half a week for two ears twice a day. I called the pharmacy to get a refill, which led to a multi-hour adventure wherein I learned (a) the insurance company didn't want to authorize it, because the refill date was for after a week and (b) I'd apparently gotten the only box of this medicine at any King Soopers in the Denver area. Oh, and hey, it's Memorial Day weekend, so good luck ordering anything. Fortunately, these are solvable problems. I think the pharmacist was able to convince the insurance company that I'd only received a half-week dose (since apparently people usually only get an infection in one ear). The on-call doctor called in a "Yeah, totally get more of that" prescription, too. (And apparently King Soopers had a coupon that would've made the drug cheaper than going through insurance, if they'd had any in stock.) After a couple calls I found a Wallgreens that had a box in stock and they were able to transfer the prescription from King Soopers.

Ordinarily I would take the position "I'll just skip this drug on Memorial Day and get it sorted out on Tuesday and it doesn't seem to be making that big of a difference anyway." But stopping an antibiotic half-way through isn't usually a good idea, and "a colony of drug-resistant bacteria in your ears" is not an attractive idea when you've just spent two weeks having aural discomfort.

Through Memorial Day, I'd generally had one ear or the other clear enough to hear conversations accurately, though I didn't have great spatial localization and I could tell I wasn't getting the full spectrum from music. Starting Tuesday, both ears felt very clogged almost all of the time; I could have a conversation, but only if I positioned myself strategically and the other person spoke up. Assuming that this was just buildup of ear drops and inflammation residue, I eagerly awaited my followup appointment for irrigation.

On Thursday, the NP looked in my ears again and pulled out a black chunk and inspected it. She concluded that it wasn't ear wax and that the antibiotic treatment hadn't solved the problem, so I should go see an ENT. I called around and found that there was an appointment early (for me) on Friday morning, as luck would have it.

I set my alarm the night before, but it didn't go off because I'd set up my clock off by 12 hours when I moved in. Oops. Fortunately, Kelly gets up early for work anyway, so she asked me "When's your appointment again?" early enough that I could do the morning gig and get to the appointment.

I really should've headed to the ENT rather than my primary care office after the first round of treatment didn't solve the whole problem. They've got a whole bunch of fancy ear tools, including long tweezers that go through the otoscope and a device that amounts to an ear vacuum. She quickly concluded that the big black hunks of goo in my ears were fungal, which clearly explains the ineffectiveness of my week of antibiotics. After removing large chunks she sprayed white antifungal powder in my ears and told me to keep them dry. Now that's something I've never had before :-)

I asked if my psoriatic arthritis might have played a role in this ear inflammation and debris buildup. The PA said that psoriasis can lead to ear issues, but that my case didn't look related. That's definitely a relief, because I was really not looking forward to my ears pulling my neck and screaming at my brain as a chronic condition.

So for the last day and a half, my left ear has been refreshingly clear and able to hear while my right ear has been ringing (though not as loudly as it was) and has reduced hearing capacity but gracefully no pain. My neck, shoulders, and jaw have also been refreshingly loose today. I've got a followup on Wednesday before I head to Apogaea where the PA will clean up the antifungal powder and take another look. Hopefully this ringing is just a little more debris stuck to the drum.

Side Effects

Tuesday, February 14th, 2017 12:30 pm
flwyd: (sun mass incandescant gas)
A somewhat surprising side effect of taking calcium channel blockers for achalasia:
20 minutes after I take a pill, my thighs get really warm right above my knees.
flwyd: (Trevor over shoulder double face)
I spent the last three months trying to eat, trying to figure out why I can't eat, and trying to get through life without many calories.

In August and early September I thought I was doing reasonably well: after losing 20 pounds in two months, my weight had stabilized. No problems were detected with my colonoscopy or EGD. I was figuring out which food textures I could handle and felt good enough to go to Burning Man. In the desert I alternated between rough days (including passing out after building camp in the sun and then having a gin and tonic without enough water) and days where I felt good enough to bike around the Playa and get excited by people's wonderful gifts.

Eating was still a challenge; on our wedding anniversary I felt accomplished because I was able to eat a hamburger and most of the bun and only had to regurgitate once. A couple days later, I started having trouble with foods that had previously been manageable and I spent a game day unable to swallow water for twelve hours. Over two weeks I lost another five pounds and realized the treatment of acid reducers and careful eating was not moving me back towards health.

Hypothesizing that my parasympathetic nervous system or vagus nerve might be compromised, I saw a neurologist in early October. He recommended an MRI, so I spent two hours in a noisy box while the rest of the country was watching Trump and Clinton debate (I think I came out ahead). The MRI didn't detect any neural problems but it did uncover an unusual mass behind my tongue, so the neurologist set up an ENT appointment for me and stressed the urgency of the matter.

My ENT visit featured an endoscopy with a camera tube pushed through my nose and into my throat. This was as uncomfortable as it sounds, and managed to trigger regurgitation of my breakfast smoothie. (I was kind of excited about this: it was the first time I'd managed to demonstrate symptoms in a doctor's office. I assured him that while it wasn't pleasant, I was happy to do all manner of unpleasant actions as long as we could get data from it.) The scope got a better look at the unusual mass and asymmetries in my esophagus, but didn't result in a clear story, other than the fact that it didn't look particularly cancerous.

Wanting a closer look, the ENT called a doctors' huddle and recommended a CT scan. This was a quickie compared to the MRI. Two ENTs looked closely at it and couldn't find anything that would cause a swallowing issue, though they did discover that I have a pair of extra salivary glands. (Maybe that's why I've always done more spitting than the average person.)

On December 7th I had a long-awaited manometry study. The previous couple days had been fairly rough from an eating perspective and I consciously didn't do anything in particular to try to improve my situation, hoping that being in bad shape would improve the chances that we'd learn something during observation. This study involved another data-collecting tube through the nose, followed by swallowing water and apple sauce while lying down. Just getting the tube into my esophagus was a challenge: my esophagus had gotten so sensitive to irritation that it was trying desperately to regurgitate this foreign object. We finally got the tube into place and I laid down, sipping water and then apple sauce while the scope recorded pressure changes along my esophagus. Swallowing with a tube in my throat was very challenging, and I don't think any of the liquids actually entered my stomach; I regurgitated a couple cups worth of goo during the process. After removing the tube, I just sat in a chair for about twenty minutes, trying (and frequently failing) to drink some water, finally succeeding thanks to a peppermint candy and time. The nurse was very supportive and empathetic, but I could tell that this reaction was far from typical.

The original plan had been to get fitted for a 24-hour esophageal pH study after doing the manometry. When I scheduled the procedure, I'd misunderstood the nature of the pH study–I thought it was going to be a wireless probe, but it was another scope, attached to a box. Although the pH tube was smaller than the first one, I reflected that there would be no way for me to eat foods like bread, fruit, and steak which would trigger my problems. Given how unhappy my esophagus was, I would've been lucky to keep down hummus and ice cream.

Last Friday afternoon, I got a call from my gastroenterologist. It was an early Christmas present in the form of a diagnosis! It turns out I have achalasia, which is Greek for "my sphincter doesn't relax." This is basically what I'd been assuming based on the last three months of eating a soft and limited diet and still regurgitating frequently: food goes down the tube but my lower esophageal sphincter doesn't open (or doesn't open very wide), so everything just backs up until it hits a critical level and everything gets kicked out the door it came in.

I was prescribed nifedipine, a calcium channel blocker which is often prescribed for high blood pressure. I've been taking 10 mg before dinner and have seen a marked improvement: I can eat significantly more while sitting for several hours than I could before the drug. Regurgitation can still trigger, particularly with gristly meat. I'm also not back to normal human eating speed: a modest meal begun at 7:30 might finish at 11. I hope this will come in time: my stomach is still adapting to this caloric increase, so the parasympathetic signaling is probably still in "whoa, slow down" mode.

Wikipedia notes that primary achalasia has no known cause, though recent research suggests there's autoimmune involvement, including one patient inventory that found that patients with achalasia were 256 times more likely to have uveitis than the control group. Hey hey, now the beginning of the year and the end of the year are coming together.

In the next two weeks I have appointments scheduled with my gastroenterologist, rheumatologist, and an upper GI surgeon. My current thought is to try the anti-autoimmune drugs first and see if they retard inflammation in the lower esophageal sphincter. This is partly because it would kill two birds with one stone (cutting back on arthritis progression and back pain) and partly because I lost all my energy reserves this year, so I'm worried about my ability to recover from a surgery. I'll see what the experts think, though.

Emotionally, this diagnosis is a big win. It's helping me switch modes from "I my body might slowly wither away and die next year" to "there's a clear path of action to eating like a normal human again." There are still some low points though–I couldn't keep down water on Christmas morning and was in a pretty morbid mood until I was finally able to hydrate in the early afternoon and then work my way through a very soft dinner.
flwyd: (smoochie sunset)
I and two other people list low-tech solutions as an interest. I periodically try to think of a good example to explain this interest, but usually draw a blank. But late last week my cat developed a urinary tract infection. I took him to the vet, who prescribed antibiotics. The last time Smoochie took antibiotics, it took five minutes of struggle to get half a dropper of bubble-gum flavored liquid into his mouth and half all over his face. With that in mind, I requested pills to try something new. Saturday night, it took a struggle to force a gravy-coated pill into his mouth. After a few tries, he swallowed it.

Enter my new favorite low-tech solution: Pill Pockets. It's a cat (or dog) treat open on one side. It's easy to slip a pill in, and if it's small you can mould the treat over the pill. Then set the treat in front of the sick cat. He'll sniff it once and eat it without thought. Brilliant and well worth the $11 I spent.
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