Monday, December 30, 2013

Too little, too late love from ExpressScripts

Had a crash and burn day after my first day back at work on Mon -- without the benefit of my RA med (Orencia) because of ExpressScript's F-up last week.

I was in horrid pain yesterday; Kate had to drive me to work. I went to bed at 7PM; I was drifting off while sitting up on the sofa. Good thing I'm off tomorrow and Wed. God knows what shape I'll be in by Thurs-Fri when I have to try to slog through a workday again.

ExpressScripts is allegedly going to deliver the med tomorrow (which I have to wait and take on Fri to stay on sched). We'll see. I received this pathetic, too-late Tweet from the company yesterday:

Update (12/31): ExpressScripts released it for delivery today according to the ExpressScripts web site; that means I won't receive it until at the earliest on Thursday (unless UPS is delivering on New Year's Day). I tried the tracking number given, but the UPS site gives the reassuring message "UPS could not locate the shipment details for your request. Please verify your information and try again later."

And then it did arrive later in the evening -- via FedEx! No wonder their site had the tracking screwed up. But I have a month's supply for now, in a couple of weeks I have to go through this all again, since I have to order it a month at a time -- by phone -- you cannot use their web site to re-order.

Friday, December 27, 2013

You know just how much Express Scripts/Accredo sucks?

Time to vent. It's all I can do when you're up against the corporate health industrial complex.

Express Scripts (@ExpressScripts)/Accredo (formerly Medco) handles my prescription insurance. These companies suck; don't ask me, just follow the hashtag #accredo or #medco. My local pharmacy is the reliable CVS, but my health plan, Blue Cross/Blue Shield, uses Accredo/Express Scripts as my primary delivery system for my chronic condition meds (I have rheumatoid arthritis, fibromyalgia, and insulin-dependent diabetes). I'm able to get a 3-month supply of most drugs at the cost of one script at CVS, but it's mail-order.

For RA I take Orencia, a once-a-week injectible that is a biologic. These drugs aren't delivered in 3-months supplies or auto-refill (these are expensive drugs,  at $20K/yr.) by the company; you get a month at a time. In fact, Accredo won't fill it unless you're practically out of it. I told them last Thursday when I arranged for delivery the following week that I was taking my last dose the following day (that Friday) and I'd need the Orencia delivered before the following Friday. They arranged to have it arrive yesterday.

I need to take the Orencia to be able to work without being in excruciating joint pain the following Monday after taking it on Friday afternoons. This class of drugs come with a lot of bad side effects (fever, chills, body aches, extreme fatigue, nausea and more), that last for a couple of days, so that's why I take it on the weekend -- so I can be in the best shape as possible during the rest of the week. It's hard to focus when you're in a lot of pain, so Orencia (and alternatively, Enbrel), have been my lifeline to being able to be effective. It has come at a cost -- I lose my weekends to these drugs. But as I said, it has allowed me to not be out of work, sick and writhing in pain.

The Thursday delivery that never happens

So yesterday comes and goes; I'm supposed to take My Orencia this afternoon. Still doesn't arrive. I call them up and the nurse says THEY WERE OUT OF STOCK AND JUST CANCELLED MY ORDER.

No phone call to me. Express Scripts/Accredo whatever the F they are calling themselves JUST DID NOTHING.

I asked, well then why didn't you call earlier in the week to see if a local pharmacy might fill it (even one dose). No answer. Get put on hold several times to see if they can find it.

She says it's now in stock and doesn't know why someone didn't contact me. I told her that I needed this med to take over the weekend (so I can deal with the bad side effects and be effective at work).

She puts me on hold again. Then she says "They do have it in stock; the soonest delivery date they have is NEXT TUESDAY. That means I don't have it today, of course, and that means going a week without it because I cannot take it when it gets here; it put me off schedule for dealing with the side effects.

And since it's Friday at 5 PM, it's too late to reach my doctor about whether to go without for a week (this isn't considered a medical emergency since I won't die without it, in corporate speak), or to take my remaining dose of Enbrel (another RA med I switched from to try Orencia) that I have in the fridge.

Guess I'm just f*cked either way. 

Since I'm only working 3 days next week because of the new year holiday, my inclination is to suffer through the week until next Friday rather than use the last dose of Enbrel today. I don't know if Express Scripts/Accredo is going to F up like this again, so I'm loathe to leave myself with nothing.

She ends the call, "Have a happy holiday/happy new year" I had been polite during the entire call. I just could no longer hold it together so I just hung up.


Update (12/31): ExpressScripts released it for delivery today according to the ExpressScripts web site; that means I won't receive it until at the earliest on Thursday (unless UPS is delivering on New Year's Day). I tried the tracking number given, but the UPS site gives the reassuring message "UPS could not locate the shipment details for your request. Please verify your information and try again later."

And then it did arrive later in the evening -- via FedEx! No wonder their site had the tracking screwed up. But I have a month's supply for now, in a couple of weeks I have to go through this all again, since I have to order it a month at a time -- by phone -- you cannot use their web site to re-order.

Saturday, December 21, 2013

Working my way through the weekend med grind.

Just posting articles in between bouts of nausea and doubled-over-level pain. Hard to distract from it; watching L&O: CI marathon (2002 eps; all Goren/Eames).

Another Saturday lost to MTX and Orencia side effects. Had to take a long nap and I still am pretty non-functional, all over pain and chills. Bleh.

Turns out Orencia is no better or worse than Enbrel, though the injection hurts a lot less.

The depressed/blue mood caused MTX is so pronounced it's kind of frightening. But that passes by late Sunday, disappearing as suddenly as it comes on; same with the other side effects. They really should alert folks more about that.

At least I don't have get on the work hamster wheel for a few days. That wheel has been way too fast lately.That or I'm just starting to lose capacity to recover. When you have to turn in at 6:30 PM, it seems kind of a soon-to-be lost cause.

Saturday, December 7, 2013

When your prescription insurance company forces you on meds that don't work

I tend to be more pragmatic when it comes to trying new medical therapies; if dealing with some side effects is part of the price for improved quality of life, then it's worth the gamble.

After the personal trial and error over the years to find medicines that work well in concert to treat my myriad conditions, I received letter in the mail from my prescription insurance company, Medco/Express Scripts, booting some from of its covered list, substituting a med that is not only more onerous to administer, but doesn't even measure up in terms of performance of the prior med.

Such was the case of Victoza. Its manufacturer, Novo Nordisk, lost its contract with Medco/Express Scripts for the drug, an non-insulin injectible that enhances blood glucose control.. It's all about the Benjamins.
The world's biggest insulin producer said it had lost two contracts with Express Scripts Holding Co - a contract for its diabetes drug Victoza, won by Bristol-Myers Squibb Co, and a deal for insulin Novolog, taken by Eli Lilly & Co.
A spokesman on Tuesday confirmed the lost business but had no further immediate comment.
Express Scripts is a purchasing organization for a number of prescription programs serving between 40 and 45 million Americans. 
"This is a serious blow for Novo Nordisk. I think it will hit earnings per share by closer to 3 percent in 2014," analyst Soren Hansen at Sydbank said.
In case you were wondering, here is the list of excluded drugs. Here's an another link explaining that the co-pay supplements offered to patients to defray the costs of the drugs has now blown back on the drug companies as the insurance companies figure they don't have to cover them. And the patients are caught in the crossfire.

Not only was Victoza off my plan, but even my blood glucose meter! The Freestyle strips and meter are no longer covered, so I have to get a LifeScan One Touch. That's not a big deal, since I can use the other meter until I have no more strips left.

But back to Victoza. What was the substitute offered by Medco/Express Scripts? Bydureon.
The Food and Drug Administration twice declined to approve Bydureon in 2010, with its most serious concern being that the drug might contribute to heart rhythm abnormalities. 
A study by Amylin, which is based in San Diego and led by Daniel M. Bradbury, suggested this was not the case. Trading in Amylin’s stock was halted in advance of the announcement of the approval; shares rose as much as 16 percent in after-hours trading.
Analysts expect annual sales of Bydureon to eventually exceed $1 billion. But they are less enthusiastic than they once were, in part because of safety concerns involving thyroid cancer and pancreatitis.
Not that Victoza doesn't have its share of risks and controversy. I've had good success with Victoza (a good number of people cannot tolerate it). Having lived with diabetes for ~30 years now, I've dealt with the old syringes/vials and mixing for years, so once I was able to move over to insulin in a pen with short slim, needles (Victoza is also administered by pen) that didn't have to be refrigerated all the time, or kept in a cooler, it was life altering.

Well, Bydureon (see the photo above) is a throwback to the old days of mixing the drug when you administer it. It comes with a spiral bound manual (yes it's that many steps) to assist patients in the DIY of mixing the powder with the liquid in a syringe. It's because once the two are mixed, a chemical reaction takes place to create the medication itself and must be used immediately.

The manual is fairly straightforward, but it's beyond annoying to have to go through these dummy-proof steps that are designed for people who will f*ck it up. I'm fortunate in that I'm not squeamish about needles after all these years, but I can imagine someone with shaky hands and a queasy stomach about shooting themselves up in the leg would be intimidated, so this is why the instructions are 20+ pages.

But god almighty it's a pain. The Victoza pen only involves screwing a very short needle on the end (all the pen needles for insulin products are standard sized) and you shoot up; you can leave it out at room temp until your pen is empty.

Efficacy of Bydureon vs. Victoza

OK, after a few weeks on the drug, I can safely say it doesn't do anything for my BG control; no awful side effects, but it's not working. My numbers have been significantly worse from the start (morning fasting BGs around 80-100 are now 190-210).

A few weeks after starting Bydureon, I also switched RA drugs. I work aggressively with my rheumatologist to find the best biologic that gives me enough quality of life to continue working, knowing that every single one has caused me to get sick after administering it (I choose Friday afternoons). I am usually sick most of the weekend -- fever, chills, joint pain through the roof -- but they subside and by Monday I'm good to work, albeit I do run out of gas after 4PM and the other aspects of RA seep back (fatigue, weakness). So I've been through Methotrexate, the front-line base drug patients start on, as well as Plaquenil. I can only tolerate low doses of MTX; I have horrible side effects, but it works well with the biologics I have tried -- Humira gave me the most relief, but caused intolerable side effects (like losing my voice). It stopped when I went back on Enbrel.

Enbrel only gives me about 4.5 good days so my rheumatologist and I decided to see if Orencia will work.

Orencia can be taken by infusion (IV), or DIY via prefilled syringe. Enbrel comes in a prefilled pen and the shot hurts like hell. Orencia is in a more intimidating syringe with a needle you can see going in, but it hurts less than Enbrel if you let it sit an hour before giving it.  Both burn as the medicine goes in.

Yesterday was really not fun, as I noted on Facebook:

Wow, that was one horrible afternoon. Fridays are when some of my weekly meds wear off and it was a sudden hard crash of surging pain everywhere that all I could do was pass out on the sofa. Orencia is clearly no better than Enbrel so far and has a rougher "finish." At least I made it home.

Then, when I went through my weekly ritual of re-upping the doses/injections (the ones that me sick over the weekend), I had to do one needle per leg, since the meds burn going in and leave the limbs sore. I take pain meds an hour before to blunt it, and that's about all it does. Since Medco made me switch one drug (it stopped covering one), the substitute hurts a ton more. Figures. (I guess the GOP's response is I should just stop complaining and die quickly, lol.)

One went a bit rougher than the norm, with profuse bleeding down my leg that took a while to stop to get a bandage on.

Good times...tomorrow's another day (or some reasonable facsimile).
 — feelingpained.

The Bydureon injection was what caused the bloody leg. I went on to say this in the comments:

...all out there battling chronic/life-changing (and particularly "invisible") illnesses know it's one day at a time, with some days a lot worse than others. And it's often less about being brave but tenacious, because your alternative is to give up. Though now I fully understand how intense chronic pain can push people to that alternative, something I didn't appreciate until I ended up like this. 

I am thankful for my lack of squeamishness about needles, blood, surgery, onerous and humiliating side effects, etc. It has to be horrible for those who have that extra burden. 

The various auto-immune-related conditions I have made themselves apparent over ~30 years (RA is the latest), it has been interesting to see how much progress has been made in medicine on what are complex diseases, but it's clear why there are no cures. Effects are so individual to one's body that even subtle differences in meds and therapies (traditional or holistic) may have radically different impacts, positive or negative. Trial and error that requires endurance (and insurance, and we see how that system fails too many!), is all we have to move the ball forward. 

I am fortunate to have an excellent, responsive health care team that does take the time to work with me (i.e. over 20 years w/the same endo). So there's a practical reason why I have little patience with the "why don't you just leave NC" arguments re:LGBT rights issues. Life isn't that black and white for everyone, and why should I have to give over the good parts of life in my state to these backwards bigots? Oy, that's a whole new thread, lol.

The major #FAIL of Orencia is it doesn't have the positive impact on my BGs that Enbrel did. The Victoza plus Enbrel worked so well that I was able to cut my insulin use by >50%. The BGs I'm running now are horrible and require 4+ shots a day. I was down to 2, sometimes 3 at most. Since I'm getting just about the same relief, I'm pretty sure I'll end up back on Enbrel. 

I don't see whether Medco/Express Scripts will cover it long term; if it doesn't then it's back on Enbrel no matter the what. I see my doc next week, so we'll discuss next steps. I may end up on voicemail hell with Express Scripts.

Sunday, December 1, 2013

Turning 50 means screening for colon cancer - do it for your health

I turned 50 this year, so the doc said it's time for my first colonoscopy. It's tomorrow AM, so today is the horrible part of it -- the prep, or colon cleanse. If you have done it, you know what's coming:

"There's no debate; people are afraid of the prep. It's the No. 1 barrier to getting a colonoscopy," said Andrew Spiegel, head of the Colon Cancer Alliance" (

So off I go (literally to the john for much of the day) after consuming:

1) only liquids for 24 hrs; the only thing resembling food -- clear chicken broth;
2) milk of magnesia (that I took last night);
3) 3PM: 2 Dulcolax tabs + 16 oz clear liquid (my choice, Crystal Light Lemonade since I can't have sugar; most drink Gatorade)
4) 5PM: 48 oz of clear liquid w/8.3 oz of MiraLax mixed in (or 2pks per 16 oz bottle) , driving 8 oz every 15 min.

...And one more 16 oz of the Miralax mix tomorrow at 4:30 AM!

Let the fun begin! Become one with the potty.

Here's a good article: 27 Insider Tips and Tricks for Colonoscopy Prep, compiled from FB friends of the Colon Cancer Alliance.


And this awareness campaign for men is already in progress...

"Have you noticed things getting a little hairy this November? We’ve loved seeing #coloncancer join the Movember movement, bringing attention to men's health issues through funky facial hair this month. Several rock star fundraisers, including radio DJ Wes Styles Radio, grew out their facial fuzz in support of colon health and the Colon Cancer Alliance -- thank you, guys! Read more about the movement":