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.

When you have neuropathy-damaged feet, good (cute) shoes are hard to find.

The stereotype is that lesbians wear "comfortable" shoes, as in unfashionable, or maybe work boots, I have no idea.

Anyway, this lesbian has serious neuropathy in both feet. I've had insulin-dependent diabetes for 30 years, and thankfully my eyes and kidneys -- usual targets of long-term damage -- are fine, unfortunately the feet are what took the damage. My blood sugars have been in good control, but it's hard not to have some long-term effects having diabetes for this long. BTW, it runs on both sides of my family -- both of my parents had adult-onset but were not obese. My brother is fine; I seemed to be the one to get all of the horrid metabolic and immune disorders passed down. Even my RA, according to my rheumatologist, was spawned through the genes; my mom had sarcoidosis, which is in the same auto-immune family.

Anyway, it's hard to describe what neuropathic pain feels like -- it's simultaneously numbness paired with extreme sensitivity at times to the touch, such as feeling like you're walking on hot coals, or someone is stabbing you with little knives on the soles of your feet.  The duality of this is both frustrating and annoying because it can ramp up at any time. The worst-case scenario is an attack of it at night -- I've had pain so bad that even having the sheet touch my feet under the covers was excruciating.

On the other hand, my feet are nearly completely numb to hot or cold, which can be dangerous. Burning hot water feels only warm on them; ice barely registers as cold. The numb aspect also makes it easy to slip in the shower, since my feet don't have the correct sensation to grip the wet floor well. I have to have bath mats all over the floor to make it to my slippers.

One of the few topical things that help is capsaicin, derived from hot peppers. Mostly this is used by folks with osteoarthritis. In treating neuropathy, the heat sensation generated by it cancels out/breaks up the neuropathic signals causing the pain. Kate tried using it on a sore muscle and she couldn't bear the burning sensation; I barely feel anything warm on my feet, but after about a half-hour, some of the worst burning subsides and I'm able to finally sleep.

But back to shoes...

Almost all my old shoes -- nice dress shoes, sandals -- had to be tossed out over the last couple of years because they either 1) hurt my feet by causing neuro-pain, or 2) didn't provide enough shock absorption to prevent knee and hip pain that I have from RA. What's left to wear? Well, lots of styles that look like Grandma Shoes. At this point, the only brand I trust to be comfortable are Easy Spirit's Athletic family. At least they come in all sorts of cool colors and styles.

I took a risk on one shoe that looked kind of cool -- the Naturalizer BZees Mary Jane (right). While they aren't dress shoes or sneakers, they fall into middle ground for me. I'll wear these to work or out on the weekend. I've learned that comfort comes before style at this point. It's really not a choice.

One of the brands that up until this about a year ago that I could reliably trust were Jambus and J-41s. I wore one pair last week and boy did I pay for it.  They seemed comfy enough -- they have memory foam insoles -- but the next day my left knee and hip hurt so bad that I was limping for two days. I had to fall back on my trusty Easy Spirit Mary Janes to get enough support and shock absorption. I was crestfallen. I love those J-41s. I wanted to make a bargain with myself that I can still wear them in some limited way...oy.